ID

16512

Description

DOCUMENTED PATHOGENS (Use this table for guidance on the pathogens of interest) Bacteria: S. pneumoniae, Other gram positive (i.e.: other streptococci, staphylococci, listeria …), Haemophilus influenzae, Other gram negative (i.e.: E. coli klebsiella, proteus, serratia, pseudomonas …), Legionella sp, Mycobacteria sp, Other Fungi: Candida sp, Aspergillus sp, Pneumocystis carinii, Other Parasites Toxoplasma gondii, Other Viruses: HSV, VZV, EBV, CMV, HHV-6, RSV, Other respiratory virus (influenza, parainfluenza,rhinovirus), Adenovirus, HBV, HCV, HIV, Papovavirus, Parvovirus, Other

Keywords

Versions (3)
  1. 7/21/16 7/21/16 -
  2. 8/10/16 8/10/16 -
  3. 9/17/21 9/17/21 -
Uploaded on

July 21, 2016

DOI

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License

Creative Commons BY-NC 3.0
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19ppEBMT SLE 16SLE

English

19ppEBMT SLE 16SLE

1 forms  
  1. StudyEvent: ODM
    1. 19ppEBMT SLE 16SLE
GENERAL INFORMATION
Description

GENERAL INFORMATION

EBMT Centre Identification Code (CIC)
Description

EBMT Centre Identification Code (CIC)

Data type

text

Alias
UMLS CUI [1]
C2348585
Name of the hospital
Description

Hospital

Data type

text

Alias
UMLS CUI [1]
C0019994
Unit
Description

Unit

Data type

text

Name of contact person
Description

Contact person

Data type

text

Alias
UMLS CUI [1]
C0337611
Telephone number of contact person
Description

Telephone

Data type

text

Alias
UMLS CUI [1]
C1515258
Fax
Description

ContactPersonFaxNumber

Data type

text

Alias
UMLS CUI [1,1]
C0027361
UMLS CUI [1,2]
C0337611
UMLS CUI [1,3]
C0085205
UMLS CUI [1,4]
C0237753
E-Mail
Description

E-Mail

Data type

text

Alias
UMLS CUI [1,1]
C1705961
UMLS CUI [1,2]
C0337611
UMLS CUI [1,3]
C0030664
Date of this report
Description

Date of this report

Data type

date

Alias
UMLS CUI [1]
C1302584
Patient following national / international study / trial
Description

Patient following national / international study / trial

Data type

integer

Alias
UMLS CUI [1]
C1997894
Name of study / trial
Description

Name of study / trial

Data type

text

Alias
UMLS CUI [1]
C0008976
GENERAL INFORMATION
Description

GENERAL INFORMATION

To be entered only if patient previously reported
Description

Unique Identification Code (UIC)

Data type

text

Alias
UMLS CUI [1]
C2348585
Hospital Unique Patient Number or Code
Description

Hospital Unique Patient Number or Code

Data type

text

Alias
UMLS CUI [1]
C1827636
First name(s)_surname(s)
Description

Initials

Data type

text

Alias
UMLS CUI [1]
C2986440
Date of birth
Description

Date of birth

Data type

date

Alias
UMLS CUI [1]
C0421451
Sex
Description

Sex

Data type

text

Alias
UMLS CUI [1]
C0079399
ABO Group
Description

ABO Group

Data type

text

Rh factor
Description

Rh factor

Data type

integer

Alias
UMLS CUI [1]
C0035403
GENERAL INFORMATION
Description

GENERAL INFORMATION

Date of diagnosis
Description

Date of diagnosis

Data type

date

Alias
UMLS CUI [1]
C2316983
Check the disease for which this transplant was performed
Description

Primary Disease Diagnosis

Data type

text

Alias
UMLS CUI [1]
C0277554
SYSTEMIC LUPUS ERITHEMATOSUS (SLE)
Description

SYSTEMIC LUPUS ERITHEMATOSUS (SLE)

Name of Referring Physician
Description

Name of Referring Physician

Data type

text

Address
Description

Address

Data type

text

Fax
Description

Fax

Data type

text

Alias
UMLS CUI [1,1]
C1549619
UMLS CUI [1,2]
C0337611
UMLS CUI [1,3]
C0030664
Email
Description

Email

Data type

text

INITIAL DIAGNOSIS
Description

INITIAL DIAGNOSIS

Has the information requested in this section been submitted with a previous transplant registration?
Description

Has the information requested in this section been submitted with a previous transplant registration?

Data type

text

DIAGNOSTIC CRITERIA FOR SYSTEMIC LUPUS ERYTHEMATOSUS
Description

DIAGNOSTIC CRITERIA FOR SYSTEMIC LUPUS ERYTHEMATOSUS

Malar rash [250]
Description

Fixed erythema, flat or raised, over the malar eminences, tending to spare the nasolabial folds

Data type

text

Discoid rash [251]
Description

Erythematous raised patches with adherent keratotic scaling and follicular plugging; atrophic scarring may occur in older lesions

Data type

text

Photosensitivity [253]
Description

Skin rash as a result of unusual reaction to sunlight, by patient history or physician observation

Data type

text

Oral ulcers [252]
Description

Oral or nasopharyngeal ulceration, usually painless, observed by a physician

Data type

text

Arthritis [226]
Description

Non-erosive arthritis involving two or more peripheral joints, characterized by tenderness, swelling or effusion

Data type

text

Serositis [225]
Description

a) Pleuritis – convincing history of pleuritic pain or rub heard by a physician or evidence of pleural effusion ~OR~ b) Pericarditis – documented by ECG or rub or evidence of pericardial effusion

Data type

text

a) Persistent proteinuria >0.5 grams per day or >3+ on urine dipsCheck if quantitation not performed ~OR~ b) Cellular casts – may be red cell, hemoglobulin, granular, tubular or mixed
Description

Renal disorder [213]

Data type

text

Neurologic disorder [221]
Description

a) Seizures – in the absence of offending drugs or known metabolic derangements; e.g., uremia, ketoacidosis or electrolyte imbalance ~OR~ b) Psychosis – in the absence of offending drugs or known metabolic derangements, e.g., uremia, ketoacidosis or electrolyte imbalance

Data type

text

Hematologic disorder [230]
Description

a) Hemolytic anemia – with reticulocytosis ~OR~ b) Thrombocytopenia – <100,000/mm 3 platelets in the absence of offending drugs

Data type

text

Immunologic disorder [254]
Description

a) Anti-DNA: antibody to native DNA in abnormal titer ~OR~ b) Anti-Sm: presence of antibody to Sm nuclear antigen ~OR~ c) Positive finding of antiphospholipid antibodies based on (1) an abnormal serum level of IgG or IgM anticardiolipin antibodies, (2) a positive test result for lupus anticoagulant using a standard method, or (3) a false positive serologic test for Syphilis known to be positive for at least 6 months and confirmed by Treponema pallidum immobilisation or fluorescent treponemal antibody absorption test ~OR d) False positive serologic test for syphilis known to be positive for at least 6 months and confirmed by Treponema pallidum immobilisation or fluorescent treponemal antibody absorption test

Data type

text

Antinuclear antibody
Description

An abnormal titer of antinuclear antibody by immunofluorescence or an equivalent assay at any point in time and in the absence of drugs known to be associated with “drug-induced lupus” syndrome.

Data type

text

FIRST LINE THERAPIES
Description

FIRST LINE THERAPIES

THERAPIES
Description

THERAPIES

Data type

boolean

Date started
Description

Datestarted

Data type

date

(including antibodies, GF, hormones, etc.)
Description

Androgen

Data type

text

(including antibodies, GF, hormones, etc.)
Description

Anti-malarials

Data type

text

Azathioprine
Description

Azathioprin

Data type

integer

Alias
UMLS CUI [1]
C0004482
Corticosteroids
Description

Corticosteroids

Data type

text

Cyclophosphamide
Description

Cyclophosphamide

Data type

text

Cyclosporine
Description

Cyclosporine

Data type

text

Mycophenolate mofetil
Description

Mycophenolate mofetil

Data type

text

Intravenous immune globulin (IVIG)
Description

Intravenous immune globulin (IVIG)

Data type

text

Other drugs (additional text)
Description

Other drugs

Data type

text

Lymphocytopheresis
Description

Lymphocytopheresis

Data type

integer

Alias
UMLS CUI [1]
C0024226
Plasmapheresis
Description

Plasmapheresis

Data type

integer

Alias
UMLS CUI [1]
C0032134
Other drugs, please specify
Description

Other drugs

Data type

boolean

DATE OF HSCT
Description

DATE OF HSCT

Date of Transplant
Description

PriorTransplantDate

Data type

date

Alias
UMLS CUI [1,1]
C0332152
UMLS CUI [1,2]
C0332835
UMLS CUI [1,3]
C2745955
UMLS CUI [1,4]
C0011008
TRANSPLANT TYPE
Description

TRANSPLANT TYPE

Data type

integer

Alias
UMLS CUI [1]
C3840412
Autologous
Description

Date of 1st collection or pheresis

Data type

date

STATUS OF DISEASE AT MOBILISATION
Description

STATUS OF DISEASE AT MOBILISATION

Was lupus nephritis present at anytime prior to mobilisation?
Description

Was lupus nephritis present at anytime prior to mobilisation?

Data type

integer

Renal biopsy done?
Description

Renal biopsy done?

Data type

integer

if renal biopsy done, date of most recent renal biopsy
Description

date of most recent renal biopsy

Data type

date

Grade Histology
Description

Grade Histology

Data type

text

if other, please specify
Description

Grade Histology

Data type

text

SLEDAI (Systemic Lupus Erythematosus Disease Activity Index) score
Description

SLEDAI (Systemic Lupus Erythematosus Disease Activity Index) score

Seizures [255]
Description

Recent onset (last 10 days). Exclude metabolic, infectious or drug cause, or seizure due to past irreversible CNS damage.

Data type

text

if yes, Score 8
Description

Seizures [255]

Data type

boolean

Psychosis [256]
Description

Altered ability to function in normal activity due to severe disturbance in the perception of reality. Include hallucinations, incoherence, marked loose associations, impoverished thought content, marked illogical thinking, bizarre, disorganized or catatonic behavior. Exclude uremia and drug causes.

Data type

integer

if yes, Scoe 8
Description

Psychosis [256]

Data type

boolean

Organic brain syndrome [257]
Description

Altered mental function with impaired orientation, memory or other intellectual function, with rapid onset and fluctuating clinical features. Include clouding of consciousness with reduced capacity to focus and inability to sustain attention to environment, plus at least 2 of the following: perceptual disturbance, incoherent speech, insomnia or daytime drowsiness or increased or decreased psychomotor activity. Exclude metabolic, infectious or drug causes.

Data type

integer

if yes, Score 8
Description

Organic brain syndrome [257]

Data type

boolean

Visual disturbance [109]
Description

Retinal and eye changes of SLE. Include cytoid bodies, retinal hemorrhages, serous exudate or hemorrhages in the choroid, optic neuritis, scleritis or episcleritis. Exclude hypertension, infection or drug causes.

Data type

integer

if yes, Score 8
Description

Visual disturbance [109]

Data type

boolean

Cranial nerve disorder [258]
Description

New onset of sensory or motor neuropathy involving cranial nerves. Include vertigo due to lupus.

Data type

text

if yes, Score 8
Description

Cranial nerve disorder [258]

Data type

boolean

Lupus headache [259]
Description

Severe, persistent headache: may be migrainous, but must be nonresponsive to narcotic analgesia.

Data type

integer

if yes, Score 8
Description

Lupus headache [259]

Data type

boolean

CVA [260]
Description

New onset of cerebrovascular accident(s). Exclude arteriosclerosis or hypertensive causes.

Data type

integer

if yes, Score 8
Description

CVA [260]

Data type

boolean

Vasculitis [234]
Description

Ulceration, gangrene, tender finger nodules, periungual infarction, splinter hemorrhages or biopsy or angiogram proof of vasculitis.

Data type

integer

if yes, Score 8
Description

Vasculitis [234]

Data type

boolean

Arthritis [226]
Description

More than 2 joints with pain and signs of inflammation (i.e., tenderness, swelling or effusion).

Data type

integer

if yes, Sore 4
Description

Arthritis [226]

Data type

boolean

Myositis [261]
Description

Proximal muscle aching/weakness, associated with elevated creatine phosphokinase/aldolase or electromyogram changes or a biopsy showing myositis.

Data type

integer

if yes, Score 4
Description

Myositis [261]

Data type

boolean

Urinary casts [262]
Description

Heme-granular or red blood cell casts.

Data type

integer

if yes, Score 4
Description

Urinary casts [262]

Data type

boolean

Hematuria [263]
Description

>5 red blood cells/high power field. Exclude stone, infection or other cause.

Data type

integer

if yes, Score 4
Description

Hematuria [263]

Data type

boolean

Proteinuria [264]
Description

>0.5 gm/24 hours. New onset or recent increase of >0.5 gm/24 hours

Data type

integer

if yes, Score 4
Description

Proteinuria [264]

Data type

boolean

Pyuria [265]
Description

>5 white blood cells/high power field. Exclude infection

Data type

integer

if yes, score 4
Description

Pyuria [265]

Data type

boolean

New rash [249]
Description

Ongoing inflammatory lupus rash

Data type

integer

if yes, Score 2
Description

New rash [249]

Data type

boolean

Alopecia [266]
Description

Ongoing abnormal, patchy or diffuse loss of hair due to active lupus.

Data type

integer

if yes, Score 2
Description

Alopecia [266]

Data type

boolean

Mucosal ulcers [252]
Description

Ongoing oral or nasal ulcerations due to active lupus

Data type

integer

if yes, Score 2
Description

Mucosal ulcers [252]

Data type

boolean

Pleurisy [267]
Description

Classic and severe pleuritic chest pain or pleural rub or effusion or new pleural thickening due to lupus.

Data type

integer

if yes, Score 2
Description

Pleurisy [267]

Data type

boolean

Pericarditis [268]
Description

Classic and severe pericardial pain or rub or effusion or electrocardiogram confirmation.

Data type

integer

if yes, Score 2
Description

Pericarditis [268]

Data type

boolean

Low complement [269]
Description

Low complement [269]

Data type

integer

if yes, Score 2
Description

Low complement [269]

Data type

boolean

Increased DNA binding [270]
Description

>25% binding by Farr assay or above normal range for testing laboratory.

Data type

integer

if yes, Score 2
Description

Increased DNA binding [270]

Data type

boolean

>38°C. Exclude infectious cause
Description

Fever [271]

Data type

integer

if yes, Score 1
Description

Fever [271]

Data type

boolean

Thrombocytopenia [272]
Description

<100,000 platelets/mm 3 (x 10 9 /L).

Data type

integer

if yes, Score 1
Description

Thrombocytopenia [272]

Data type

boolean

Leukopenia [272]
Description

<3,000 white blood cells/mm 3 (x 10 9 /L). Exclude drug causes.

Data type

integer

if yes, Score 1
Description

Leukopenia [272]

Data type

boolean

LABORATORY VALUES
Description

LABORATORY VALUES

Haemoglobin
Description

Haemoglobin

Data type

float

Measurement units
  • g/dL
Alias
UMLS CUI [1]
C0019046
g/dL
Hemoglobin
Description

Haemoglobin

Data type

integer

Alias
UMLS CUI [1]
C0518015
Erythrocyte Sedimentation Rate
Description

ESR

Data type

integer

Measurement units
  • mm/hr
Alias
UMLS CUI [1]
C1176468
mm/hr
Erythrocyte sedimentation rate
Description

Erythrocyte sedimentation rate

Data type

integer

Platelets
Description

platelets

Data type

integer

Measurement units
  • x10^9 /l
Alias
UMLS CUI [1]
C0005821
x10^9 /l
Platelets
Description

Platelets

Data type

integer

WBC
Description

WBC

Data type

float

Measurement units
  • x10^9/l
Alias
UMLS CUI [1]
C0023508
x10^9/l
WBC
Description

WBC

Data type

integer

Serum creatinine
Description

Serumcreatinine

Data type

float

Serum creatinine
Description

Serum creatinine

Data type

integer

Creatinine Clearance
Description

Creatinine Clearance

Data type

float

Measurement units
  • mL/min
Alias
UMLS CUI [1]
C0373595
mL/min
Creatinine clearance
Description

Creatinine clearance

Data type

integer

Total urinary protein excretion (mg/24 h)
Description

Total urinary protein excretion (mg/24 h)

Data type

float

Alias
UMLS CUI [1]
C3897352
Total urinary protein excretion
Description

Total urinary protein excretion

Data type

integer

CH50 Complement reduced
Description

CH50 Complement reduced

Data type

integer

Complement component C3 reduced
Description

Complement component reduced

Data type

integer

Complement component C4 reduced
Description

Complement component reduced

Data type

text

Antibodies studied
Description

Antibodies studied

Data type

text

Antibodies studied, if yes
Description

anti-dsDNA

Data type

integer

anti-cardiolipin IgG
Description

anti-cardiolipin IgG

Data type

integer

anti-cardiolipin IgM
Description

anti-cardiolipin IgM

Data type

integer

antinuclear antibody (ANA) test
Description

antinuclear antibody (ANA) test

Data type

integer

anti-Sm
Description

anti-Sm

Data type

integer

anti-SSA (anti-Ro)
Description

anti-SSA (anti-Ro)

Data type

integer

anti-SSB (anti-La)
Description

anti-SSB (anti-La)

Data type

integer

lupus-anticoagulant
Description

lupus-anticoagulant

Data type

integer

PATIENT’S SELF ASSESSMENT PRIOR TO MOBILISATION
Description

PATIENT’S SELF ASSESSMENT PRIOR TO MOBILISATION

SF-36 Health Survey completed
Description

SF-36 Health Survey completed

Data type

integer

if yes, score reported as
Description

SF-36 Health Survey completed

Data type

text

Physical Functioning
Description

Physical Functioning

Data type

float

Physical Functioning
Description

Physical Functioning

Data type

integer

Role Functioning-Physical
Description

Role Functioning-Physical

Data type

float

Role Functioning-Physical
Description

Role Functioning-Physical

Data type

integer

Role Functioning-Emotional
Description

Role Functioning-Emotional

Data type

float

Role Functioning-Emotional
Description

Role Functioning-Emotional

Data type

integer

Social Functioning
Description

Social Functioning

Data type

float

Social Functioning
Description

Social Functioning

Data type

integer

Bodily Pain
Description

Bodily Pain

Data type

float

Bodily Pain
Description

Bodily Pain

Data type

integer

Mental Health
Description

Mental Health

Data type

float

Mental Health
Description

Mental Health

Data type

integer

Vitality:
Description

Vitality:

Data type

float

Vitality
Description

Vitality

Data type

integer

General Health
Description

General Health

Data type

float

General Health
Description

General Health

Data type

integer

HEALTH ASSESSMENT QUESTIONNAIRE (HAQ)
Description

HEALTH ASSESSMENT QUESTIONNAIRE (HAQ)

Did the patient complete a Health Assessment Questionnaire (HAQ)?
Description

Did the patient complete a Health Assessment Questionnaire (HAQ)?

Data type

integer

Patient’s score
Description

Patient’s score

Data type

float

Worst possible score
Description

Worst possible score

Data type

float

Best possible score
Description

Best possible score

Data type

float

STATUS OF DISEASE AT HSCT
Description

STATUS OF DISEASE AT HSCT

Was lupus nephritis present at anytime prior to HSCT?
Description

Was lupus nephritis present at anytime prior to HSCT?

Data type

text

if yes, date of most recent renal biopsy
Description

Was lupus nephritis present at anytime prior to HSCT?

Data type

date

Grade Histology
Description

Grade Histology

Data type

text

Renal biopsy done?
Description

Renal biopsy done?

Data type

text

ADDITIONAL TREATMENT POST-HSCT
Description

ADDITIONAL TREATMENT POST-HSCT

ADDITIONAL DISEASE TREATMENT
Description

ADDITIONAL DISEASE TREATMENT

Data type

boolean

ADDITIONAL DISEASE TREATMENT if yes
Description

ADDITIONAL DISEASE TREATMENT

Data type

integer

Alias
UMLS CUI [1]
C1706712
FORMS TO BE FILLED IN
Description

FORMS TO BE FILLED IN

TYPE OF TRANSPLANT
Description

TYPE OF TRANSPLANT

Data type

integer

SYSTEMIC LUPUS ERITHEMATOSUS (SLE)
Description

SYSTEMIC LUPUS ERITHEMATOSUS (SLE)

Unique Identification Code (UIC) (if known)
Description

Unique Identification Code (UIC)

Data type

text

Alias
UMLS CUI [1]
C2348585
Date of this report
Description

Date of this report

Data type

date

Alias
UMLS CUI [1]
C1302584
Patient following national / international study / trial
Description

Patient following national / international study / trial

Data type

integer

Alias
UMLS CUI [1]
C1997894
Name of study / trial
Description

Name of study / trial

Data type

text

Alias
UMLS CUI [1]
C0008976
Hospital Unique Patient Number
Description

Hospital Unique Patient Number

Data type

text

Alias
UMLS CUI [1]
C2348585
First name(s)_surname(s)
Description

Initials

Data type

text

Alias
UMLS CUI [1]
C2986440
Date of birth
Description

Date of birth

Data type

date

Alias
UMLS CUI [1]
C0421451
Date of last HSCT for this patient
Description

Date of last HSCT for this patient

Data type

date

Alias
UMLS CUI [1,1]
C0472699
UMLS CUI [1,2]
C0011008
PATIENT LAST SEEN
Description

PATIENT LAST SEEN

Date of Last Contact or Death
Description

Date last contact

Data type

date

Alias
UMLS CUI [1]
C0805839
GRAFT VERSUS HOST DISEASE (GvHD) SINCE LAST REPORT
Description

GRAFT VERSUS HOST DISEASE (GvHD) SINCE LAST REPORT

Maximum grade
Description

Maximum grade

Data type

integer

If present GvHD, Maximum grade
Description

Maximum grade

Data type

integer

Alias
UMLS CUI [1,1]
C0856825
UMLS CUI [1,2]
C0441800
Reason
Description

Maximum grade

Data type

integer

Date onset of this episode (if new or recurrent)
Description

Date onset of this episode

Data type

date

Measurement units
  • yyyy/mm/dd
Alias
UMLS CUI [1]
C0574845
yyyy/mm/dd
Date onset of this episode
Description

Date onset of this episode

Data type

integer

Alias
UMLS CUI [1,1]
C0574845
UMLS CUI [1,2]
C0011008
Stage skin
Description

aGvHD Stage Skin

Data type

integer

Alias
UMLS CUI [1,1]
C0856825
UMLS CUI [1,2]
C1306673
UMLS CUI [1,3]
C1306673
Stage liver
Description

aGvHD Stage liver

Data type

integer

Alias
UMLS CUI [1,1]
C0856825
UMLS CUI [1,2]
C1306673
UMLS CUI [1,3]
C0023884
Stage gut
Description

aGvHD stage gut

Data type

integer

Alias
UMLS CUI [1,1]
C0856825
UMLS CUI [1,2]
C1306673
UMLS CUI [1,3]
C0021853
Resolution
Description

aGvHD Resolution

Data type

integer

Alias
UMLS CUI [1,1]
C0856825
UMLS CUI [1,2]
C1514893
Date of resolution
Description

aGvHD Date of resolution

Data type

date

Measurement units
  • yyyy/mm/dd
Alias
UMLS CUI [1,1]
C0856825
UMLS CUI [1,2]
C1514893
UMLS CUI [1,3]
C0011008
yyyy/mm/dd
Presence of cGvHD
Description

Chronic Graft versus Host Disease (cGvHD)

Data type

text

Alias
UMLS CUI [1]
C0867389
Date of onset
Description

Date of onset

Data type

date

Alias
UMLS CUI [1]
C0574845
Presence of cGVHD if yes
Description

Presence of cGVHD

Data type

integer

Alias
UMLS CUI [1]
C0867389
Date of onset
Description

Date of onset

Data type

date

Alias
UMLS CUI [1]
C0574845
cGvHD grade
Description

cGvHD grade

Data type

integer

Alias
UMLS CUI [1,1]
C0867389
UMLS CUI [1,2]
C0441800
Organs affected
Description

Organs affected

Data type

integer

Alias
UMLS CUI [1]
C0449642
If resolved, specify the date of resolution:
Description

Date of Resolution

Data type

date

Alias
UMLS CUI [1,1]
C1514893
UMLS CUI [1,2]
C0011008
OTHER COMPLICATIONS SINCE LAST REPORT
Description

OTHER COMPLICATIONS SINCE LAST REPORT

Infection related complications
Description

Infection related complications

Data type

boolean

Alias
UMLS CUI [1,1]
C0009450
UMLS CUI [1,2]
C0009566
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Description

Bacteremia / fungemia / viremia / parasites

Data type

text

Date Provide different dates for different episodes of the same complication if applicable.
Description

Bacteremia / fungemia / viremia / parasites

Data type

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Description

Septic shock

Data type

text

Date Provide different dates for different episodes of the same complication if applicable.
Description

Septic shock

Data type

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Description

ARDS

Data type

text

Date Provide different dates for different episodes of the same complication if applicable
Description

ARDS

Data type

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Description

Multiorgan failure due to infection

Data type

text

Date Provide different dates for different episodes of the same complication if applicable.
Description

Multiorgan failure due to infection

Data type

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Description

Pneumonia

Data type

text

Date Provide different dates for different episodes of the same complication if applicable.
Description

Pneumonia

Data type

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Description

Hepatitis

Data type

text

Date Provide different dates for different episodes of the same complication if applicable.
Description

Hepatitis

Data type

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Description

CNS infection

Data type

text

Date Provide different dates for different episodes of the same complication if applicable.
Description

CNS infection

Data type

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Description

Gut infection

Data type

text

Date Provide different dates for different episodes of the same complication if applicable.
Description

Gut infection

Data type

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Description

Skin infection

Data type

text

Date Provide different dates for different episodes of the same complication if applicable.
Description

Skin infection

Data type

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Description

Cystitis

Data type

text

Date Provide different dates for different episodes of the same complication if applicable.
Description

Cystitis

Data type

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Description

Retinitis

Data type

text

Date Provide different dates for different episodes of the same complication if applicable.
Description

Retinitis

Data type

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Description

Other

Data type

text

Date Provide different dates for different episodes of the same complication if applicable
Description

Other

Data type

text

Non infection related complications
Description

Non infection related complications

Data type

boolean

Alias
UMLS CUI [1]
C0009566
Idiopathic pneumonia syndrome
Description

Idiopathic pneumonia syndrome

Data type

integer

Alias
UMLS CUI [1]
C1504431
Idiopathic pneumonia syndrome
Description

Idiopathic pneumonia syndrome

Data type

date

Alias
UMLS CUI [1,1]
C1504431
UMLS CUI [1,2]
C0011008
(Check all that are applicable for this period)
Description

VOD

Data type

integer

Alias
UMLS CUI [1]
C0948441
VOD
Description

VOD

Data type

date

(Check all that are applicable for this period)
Description

Cataract

Data type

integer

Alias
UMLS CUI [1]
C0086543
Cataract
Description

Cataract

Data type

date

Check all that are applicable for this period Haemorrhagic cystitis, non infectious
Description

Haemorrhagic cystitis, non infectious

Data type

text

Alias
UMLS CUI [1]
C0085692
Haemolytic anaemia due to blood group
Description

Haemolytic anaemia due to blood group

Data type

date

Specify: ARDS, non infectious
Description

ARDS, non infectious

Data type

text

Alias
UMLS CUI [1]
C0035222
ARDS, non infectious
Description

ARDS, non infectious

Data type

date

Check all that are applicable for this period)
Description

Multiorgan failure, non infectious

Data type

integer

Multiorgan failure, non infectious
Description

Multiorgan failure, non infectious

Data type

date

(Check all that are applicable for this period HSCT-associated microangiopathy
Description

HSCT-associated microangiopathy

Data type

text

Alias
UMLS CUI [1]
C0155765
HSCT-associated microangiopathy
Description

HSCT-associated microangiopathy

Data type

date

(Check all that are applicable for this period) Renal failure requiring dialysis
Description

Renal failure requiring dialysis

Data type

text

Alias
UMLS CUI [1]
C0035078
Renal failure requiring dialysis
Description

Renal failure requiring dialysis

Data type

date

(Check all that are applicable for this period) Haemolytic anaemia due to blood group
Description

Haemolytic anaemia due to blood group

Data type

integer

Alias
UMLS CUI [1]
C0002878
Haemolytic anaemia due to blood group
Description

Haemolytic anaemia due to blood group

Data type

date

Check all that are applicable for this period) Aseptic bone necrosis
Description

Aseptic bone necrosis

Data type

text

Alias
UMLS CUI [1]
C0158452
Aseptic bone necrosis
Description

Aseptic bone necrosis

Data type

date

Other type, (Check all that are applicable for this period)
Description

Other

Data type

boolean

Other type
Description

Other type

Data type

date

GRAFT ASSESSMENT AND HAEMOPOIETIC CHIMAERISM
Description

GRAFT ASSESSMENT AND HAEMOPOIETIC CHIMAERISM

Graft loss
Description

Graft loss

Data type

text

Alias
UMLS CUI [1]
C0877042
Overall chimaerism
Description

Overall chimaerism

Data type

integer

Date of test (Indicate the date(s) and results of all tests done for all donors. Split the results by donor and by the cell type on which the test was performed if applicable. Copy this table as many times as necessary.)
Description

Date of test

Data type

date

Alias
UMLS CUI [1]
C2826247
Identification of donor or Cord Blood Unit given by the centre
Description

Identification

Data type

text

Alias
UMLS CUI [1]
C1718162
Number in the infusion order (if applicable) (Indicate the date(s) and results of all tests done for all donors. Split the results by donor and by the cell type on which the test was performed if applicable. Copy this table as many times as necessary.)
Description

Number in the infusion order

Data type

text

Alias
UMLS CUI [1]
C0237753
Number in the infusion order
Description

Number in the infusion order

Data type

integer

Cell type on which test was performed (% Donor Cells): BM
Description

Bone marrow

Data type

float

Measurement units
  • %
Alias
UMLS CUI [1]
C0005953
%
Cell type on which test was performed (% Donor cells): PB mononuclear cells (PBMC)
Description

PB mononuclear cells (PBMC)

Data type

float

Measurement units
  • %
Alias
UMLS CUI [1]
C1321301
%
Cell type on which test was performed (% Donor cells):
Description

T-cell

Data type

float

Measurement units
  • %
%
Cell type on which test was performed (% Donor cells): Red blood cells
Description

Red blood cells

Data type

float

Measurement units
  • %
Alias
UMLS CUI [1]
C0014772
%
Cell type on which test was performed (% Donor cells): Monocytes
Description

Monocytes

Data type

float

Measurement units
  • %
Alias
UMLS CUI [1]
C0026473
%
Cell type on which test was performed (% Donor cells): PMNs (neutrophils)
Description

PMNs (neutrophils)

Data type

float

Measurement units
  • %
Alias
UMLS CUI [1]
C0200633
%
Cell type on which test was performed (% Donor cells): Lymphocytes, NOS
Description

Lymphocytes, NOS

Data type

float

Measurement units
  • %
Alias
UMLS CUI [1]
C0024264
%
Cell type on which test was performed (% Donor cells): Myeloid cells, NOS
Description

Myeloid cells, NOS

Data type

float

Measurement units
  • %
Alias
UMLS CUI [1]
C0887899
%
Cell type on which test was performed
Description

Other

Data type

text

Test used
Description

Laboratory tests

Data type

integer

Alias
UMLS CUI [1]
C0022885
SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
Description

SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED

Data type

integer

if yes, date of diagnosis
Description

SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED

Data type

date

Diagnosis
Description

Diagnosis

Data type

text

ADDITIONAL THERAPIES SINCE LAST FOLLOW UP
Description

ADDITIONAL THERAPIES SINCE LAST FOLLOW UP

Treatment given since last report
Description

Additional treatment

Data type

text

Alias
UMLS CUI [1]
C1706712
if yes treatment given since last report
Description

Date started

Data type

date

If yes: Cellular therapy (One cell therapy regimen is defined as any number of infusions given within 10 weeks for the same indication. If more than one regimen of cell therapy has been given since last report, copy this section and complete it as many times as necessary.)
Description

Cellular therapy

Data type

integer

Alias
UMLS CUI [1]
C0302189
Disease status before this cellular therapy
Description

Disease status before this cellular therapy

Data type

integer

Alias
UMLS CUI [1]
C0012634
Type of cells
Description

Type of cells

Data type

text

If other
Description

Type of cells

Data type

text

Number of cells infused by type
Description

Number of cells infused by type

Number of Nucleated cells infused (DLI only)
Description

Nucleated cells

Data type

integer

Measurement units
  • 10^8/kg
Alias
UMLS CUI [1]
C1180059
specify the number of cells infused by type: CD 34+
Description

CD 34+

Data type

text

Alias
UMLS CUI [1]
C3538723
If DLI, specify the number of cells infused by type: CD 34+
Description

CD 34+

Data type

text

Alias
UMLS CUI [1]
C3538723
specify the number of cells infused by type: CD 3+
Description

CD 3+

Data type

float

Alias
UMLS CUI [1]
C3542405
If DLI, specify the number of cells infused by type: CD 3+
Description

CD 3+

Data type

text

Alias
UMLS CUI [1]
C3542405
Total number of cells infused (non DLI only)
Description

All cells

Data type

integer

Measurement units
  • x10^6/kg
Alias
UMLS CUI [1]
C0007584
Chronological number of this cell therapy for this patient
Description

Chronological number

Data type

float

Alias
UMLS CUI [1]
C2348184
Indication (check all that apply)
Description

Indication

Data type

text

Alias
UMLS CUI [1,1]
C3146298
UMLS CUI [1,2]
C0302189
Number of Infusions (within 10 weeks) (count only infusions that are part of same regimen and given for the same indication)
Description

Number of Infusions

Data type

float

Alias
UMLS CUI [1,1]
C2348184
UMLS CUI [1,2]
C1289919
Maximum grade
Description

Maximum grade

Data type

integer

Disease treatment (apart from donor cell infusion or other type of cell therapy)
Description

Disease treatment

Data type

integer

Alias
UMLS CUI [1]
C0087111
FIRST EVIDENCE OF DISEASE WORSENING SINCE LAST HSCT
Description

FIRST EVIDENCE OF DISEASE WORSENING SINCE LAST HSCT

EVIDENCE OF DISEASE ACTIVITY
Description

EVIDENCE OF DISEASE ACTIVITY

Data type

text

Date First Noted (mm-dd-yyyy)
Description

EVIDENCE OF DISEASE ACTIVITY

Data type

date

LAST DISEASE AND PATIENT STATUS
Description

LAST DISEASE AND PATIENT STATUS

Seizures [255]
Description

Recent onset (last 10 days). Exclude metabolic, infectious or drug cause, or seizure due to past irreversible CNS damage.

Data type

text

Psychosis [256]
Description

Altered ability to function in normal activity due to severe disturbance in the perception of reality. Include hallucinations, incoherence, marked loose associations, impoverished thought content, marked illogical thinking, bizarre, disorganized or catatonic behavior. Exclude uremia and drug causes.

Data type

text

Organic brain syndrome [257]
Description

Altered mental function with impaired orientation, memory or other intellectual function, with rapid onset and fluctuating clinical features. Include clouding of consciousness with reduced capacity to focus and inability to sustain attention to environment, plus at least 2 of the following: perceptual disturbance, incoherent speech, insomnia or daytime drowsiness or increased or decreased psychomotor activity. Exclude metabolic, infectious or drug causes.

Data type

text

Visual disturbance [109]
Description

Retinal and eye changes of SLE. Include cytoid bodies, retinal hemorrhages, serous exudate or hemorrhages in the choroid, optic neuritis, scleritis or episcleritis. Exclude hypertension, infection or drug causes.

Data type

text

Cranial nerve disorder [258]
Description

New onset of sensory or motor neuropathy involving cranial nerves. Include vertigo due to lupus.

Data type

text

Lupus headache [259]
Description

Severe, persistent headache: may be migrainous, but must be nonresponsive to narcotic analgesia.

Data type

text

CVA [260]
Description

New onset of cerebrovascular accident(s). Exclude arteriosclerosis or hypertensive causes.

Data type

text

Vasculitis [234]
Description

Ulceration, gangrene, tender finger nodules, periungual infarction, splinter hemorrhages or biopsy or angiogram proof of vasculitis.

Data type

text

Arthritis [226]
Description

More than 2 joints with pain and signs of inflammation (i.e., tenderness, swelling or effusion).

Data type

text

Myositis [261]
Description

Proximal muscle aching/weakness, associated with elevated creatine phosphokinase/aldolase or electromyogram changes or a biopsy showing myositis.

Data type

text

Urinary casts [262]
Description

Heme-granular or red blood cell casts.

Data type

text

Hematuria [263]
Description

>5 red blood cells/high power field. Exclude stone, infection or other cause.

Data type

text

Proteinuria [264]
Description

>0.5 gm/24 hours. New onset or recent increase of >0.5 gm/24 hours.

Data type

text

Pyuria [265]
Description

>5 white blood cells/high power field. Exclude infection.

Data type

text

New rash [249]
Description

Ongoing inflammatory lupus rash.

Data type

text

Alopecia [266]
Description

Ongoing abnormal, patchy or diffuse loss of hair due to active lupus.

Data type

text

Mucosal ulcers [252]
Description

Ongoing oral or nasal ulcerations due to active lupus

Data type

text

Pleurisy [267]
Description

Classic and severe pleuritic chest pain or pleural rub or effusion or new pleural thickening due to lupus.

Data type

text

Pericarditis [268]
Description

Classic and severe pericardial pain or rub or effusion or electrocardiogram confirmation.

Data type

text

Low complement [269]
Description

Decrease in CH50, C3 or C4 below the lower limit of normal for testing laboratory.

Data type

text

Increased DNA binding [270]
Description

>25% binding by Farr assay or above normal range for testing laboratory.

Data type

text

Fever [271]
Description

>38°C. Exclude infectious cause.

Data type

text

Thrombocytopenia [272]
Description

<100,000 platelets/mm 3 (x 10 9 /L).

Data type

text

Leukopenia [272]
Description

<3,000 white blood cells/mm 3 (x 10 9 /L). Exclude drug causes.

Data type

text

LABORATORY VALUES
Description

LABORATORY VALUES

Haemoglobin
Description

Haemoglobin Blood

Data type

float

Alias
UMLS CUI [1]
C0518015
Haemoglobin
Description

Haemoglobin

Data type

text

Platelet count
Description

Platelets

Data type

float

Measurement units
  • 1000/uL
Alias
UMLS CUI [1]
C0005821
1000/uL
Platelets
Description

Platelets

Data type

text

WBC
Description

WBC

Data type

float

WBC
Description

WBC

Data type

text

Erythrocyte Sedimentation Rate
Description

ESR

Data type

float

Alias
UMLS CUI [1]
C1176468
Erythrocyte sedimentation rate
Description

Erythrocyte sedimentation rate

Data type

text

Serum creatinine
Description

Creatinine, Serum

Data type

float

Measurement units
  • mg/dL
Alias
UMLS CUI [1]
C0201976
mg/dL
Serum creatinine
Description

Serum creatinine

Data type

text

Creatinine Clearance
Description

Creatinine Clearance

Data type

float

Measurement units
  • mL/min
Alias
UMLS CUI [1]
C0373595
mL/min
Creatinine clearance
Description

Creatinine clearance

Data type

text

Total urinary protein excretion (mg/24 h)
Description

Total urinary protein excretion (mg/24 h)

Data type

float

Alias
UMLS CUI [1]
C3897352
Total urinary protein excretion
Description

Total urinary protein excretion

Data type

text

CH50 Complement reduced
Description

CH50 Complement reduced

Data type

integer

Complement component C3 reduced
Description

Complement component reduced

Data type

integer

Complement component C4 reduced
Description

Complement component reduced

Data type

text

Antibodies studied
Description

Antibodies studied

Data type

integer

Antibodies studied, if yes
Description

anti-dsDNA

Data type

text

Antibodies studied, if yes
Description

anti-cardiolipin IgG

Data type

text

Antibodies studied, if yes
Description

anti-cardiolipin IgM

Data type

text

Antibodies studied, if yes
Description

antinuclear antibody (ANA) test

Data type

text

anti-Sm Antibodies studied, if yes
Description

anti-Sm

Data type

text

anti-SSA (anti-Ro) Antibodies studied, if yes
Description

anti-SSA (anti-Ro)

Data type

text

anti-SSB (anti-La) Antibodies studied, if yes
Description

anti-SSB (anti-La)

Data type

text

lupus-anticoagulant Antibodies studied, if yes
Description

lupus-anticoagulant

Data type

text

PATIENT’S SELF ASSESSMENT AT THIS FOLLOW UP
Description

PATIENT’S SELF ASSESSMENT AT THIS FOLLOW UP

SF-36 Health Survey completed
Description

SF-36 Health Survey completed

Data type

text

SF-36 score reported as
Description

SF-36 score reported as

Data type

text

Physical Functioning
Description

Physical Functioning

Data type

float

Physical Functioning
Description

Physical Functioning

Data type

text

Role Functioning-Physical
Description

Role Functioning-Physical

Data type

float

Role Functioning-Physical
Description

Role Functioning-Physical

Data type

integer

Role Functioning-Emotional
Description

Role Functioning-Emotional

Data type

float

Role Functioning-Emotional
Description

Role Functioning-Emotional

Data type

integer

Social Functioning
Description

Social Functioning

Data type

float

Social Functioning
Description

Social Functioning

Data type

integer

Bodily Pain
Description

Bodily Pain

Data type

float

Bodily Pain
Description

Bodily Pain

Data type

integer

Mental Health
Description

Mental Health

Data type

float

Mental Health
Description

Mental Health

Data type

integer

Vitality
Description

Vitality

Data type

float

Vitality
Description

Vitality

Data type

integer

General Health
Description

General Health

Data type

float

General Health
Description

General Health

Data type

integer

Did the patient complete a Health Assessment Questionnaire (HAQ)?
Description

Did the patient complete a Health Assessment Questionnaire (HAQ)?

Data type

integer

Patient’s score
Description

Patient’s score

Data type

float

Worst possible score
Description

Worst possible score

Data type

float

Best possible score
Description

Best possible score

Data type

float

Has patient or partner become pregnant after this HSCT?
Description

Has patient or partner become pregnant after this HSCT?

Data type

text

Survival Status
Description

Survival Status

Data type

integer

Alias
UMLS CUI [1]
C1148433
Type of score used PERFORMANCE SCORE (if alive)
Description

Type of score used

Data type

integer

Score
Description

Performance score

Data type

integer

Alias
UMLS CUI [1]
C1518965
Cause of death (if dead)
Description

Cause of death

Data type

integer

Alias
UMLS CUI [1]
C0007465
GvHD
Description

GvHD

Data type

text

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C0018133
Interstitial Pneumonitis
Description

Interstitial Pneumonitis

Data type

text

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C0206061
Pulmonary toxicity
Description

Pulmonary toxicity

Data type

text

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C0919924
Infection
Description

Infection

Data type

integer

Infection
Description

Infection HSCT

Data type

integer

Rejection / poor graft function
Description

Rejection / poor graft function

Data type

integer

Alias
UMLS CUI [1]
C0018129
Veno-Occlusive disease (VOD)
Description

Veno-Occlusive disease (VOD)

Data type

integer

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C0948441
Haemorrhage
Description

Haemorrhage

Data type

integer

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C0019080
Cardiac toxicity
Description

Cardiac toxicity

Data type

integer

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C0876994
Central nervous system toxicity
Description

Central nervous system toxicity

Data type

integer

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C3160947
Gastro intestinal toxicity
Description

Gastro intestinal toxicity

Data type

integer

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C1142499
Skin toxicity
Description

Skin toxicity

Data type

integer

Alias
UMLS CUI [1]
C1167791
Renal failure
Description

Renal failure

Data type

integer

Alias
UMLS CUI [1]
C1533077
Multiple organ failure
Description

Multiple organ failure

Data type

integer

Other related cause
Description

Other related cause

Data type

boolean

ADDITIONAL NOTES IF APPLICABLE
Description

ADDITIONAL NOTES IF APPLICABLE

Comments
Description

Comments

Data type

text

IDENTIFICATION & SIGNATURE
Description

IDENTIFICATION & SIGNATURE

Data type

text

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Similar models

19ppEBMT SLE 16SLE

1 forms
  1. StudyEvent: ODM
    1. 19ppEBMT SLE 16SLE
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
GENERAL INFORMATION
EBMT Centre Identification Code (CIC)
Item
EBMT Centre Identification Code (CIC)
text
C2348585 (UMLS CUI [1])
Hospital
Item
Name of the hospital
text
C0019994 (UMLS CUI [1])
Unit
Item
Unit
text
Contact person
Item
Name of contact person
text
C0337611 (UMLS CUI [1])
Telephone
Item
Telephone number of contact person
text
C1515258 (UMLS CUI [1])
ContactPersonFaxNumber
Item
Fax
text
C0027361 (UMLS CUI [1,1])
C0337611 (UMLS CUI [1,2])
C0085205 (UMLS CUI [1,3])
C0237753 (UMLS CUI [1,4])
E-Mail
Item
E-Mail
text
C1705961 (UMLS CUI [1,1])
C0337611 (UMLS CUI [1,2])
C0030664 (UMLS CUI [1,3])
Date of this report
Item
Date of this report
date
C1302584 (UMLS CUI [1])
Item
Patient following national / international study / trial
integer
C1997894 (UMLS CUI [1])
Patient following national / international study / trial
Code List
Patient following national / international study / trial
CL Item
no (1)
CL Item
yes (2)
CL Item
unknown (3)
Name of study / trial
Item
Name of study / trial
text
C0008976 (UMLS CUI [1])
Item Group
GENERAL INFORMATION
Unique Identification Code (UIC)
Item
To be entered only if patient previously reported
text
C2348585 (UMLS CUI [1])
Hospital Unique Patient Number or Code
Item
Hospital Unique Patient Number or Code
text
C1827636 (UMLS CUI [1])
Initials
Item
First name(s)_surname(s)
text
C2986440 (UMLS CUI [1])
Date of birth
Item
Date of birth
date
C0421451 (UMLS CUI [1])
Item
Sex
text
C0079399 (UMLS CUI [1])
Sex
Code List
Sex
CL Item
Male (1)
CL Item
Female (2)
ABO Group
Item
ABO Group
text
Item
Rh factor
integer
C0035403 (UMLS CUI [1])
Rh factor
Code List
Rh factor
CL Item
Absent (1)
CL Item
Present  (2)
CL Item
Not evaluated (3)
Item Group
GENERAL INFORMATION
Date of diagnosis
Item
Date of diagnosis
date
C2316983 (UMLS CUI [1])
Item
Check the disease for which this transplant was performed
text
C0277554 (UMLS CUI [1])
Primary Disease Diagnosis
Code List
Check the disease for which this transplant was performed
CL Item
Acute Leukaemia (Acute Leukaemia)
CL Item
Acute Lymphoblastic Leukaemia (ALL) (Acute Lymphoblastic Leukaemia (ALL))
CL Item
Acute Myelogenous Leukaemia (AML) (Acute Myelogenous Leukaemia (AML))
CL Item
Autoimmune disease (Autoimmune disease)
CL Item
Bone marrow failure including Aplastic anaemia (Bone marrow failure including Aplastic anaemia)
CL Item
Chronic Leukaemia (Chronic Leukaemia)
CL Item
Chronic Lymphocytic Leukaemia (Chronic Lymphocytic Leukaemia)
CL Item
Chronic Myeloid Leukaemia (CML) (Chronic Myeloid Leukaemia (CML))
CL Item
Haemoglobinopathiy (Haemoglobinopathiy)
CL Item
Histiocytic disorders (Histiocytic disorders)
CL Item
Hodgkin´s Disease (Hodgkin´s Disease)
CL Item
Inherited disorders (Inherited disorders)
CL Item
Juvenile Idiopathic Arthritis (Juvenile Idiopathic Arthritis)
CL Item
Lymphoma (Lymphoma)
CL Item
MD/ MPN (MD/ MPN)
CL Item
MDS (MDS)
CL Item
Metabolic disorders (Metabolic disorders)
CL Item
Multiple Sclerosis (Multiple Sclerosis)
CL Item
Myelodysplastic syndromes (Myelodysplastic syndromes)
CL Item
Myeloma/ Plasma cell disorder (Myeloma/ Plasma cell disorder)
CL Item
Myeloproliferative neoplasm (Myeloproliferative neoplasm)
CL Item
Non Hodgkin (Non Hodgkin)
CL Item
Other diagnosis (Other diagnosis)
CL Item
Primary immune deficiencies (Primary immune deficiencies)
CL Item
Secondary Acute Leukaemia (do not use if transformed from MDS/MPN) (Secondary Acute Leukaemia (do not use if transformed from MDS/MPN))
CL Item
Solid Tumour (Solid Tumour)
CL Item
Systemic Lupus (Systemic Lupus)
CL Item
Systemic Sclerosis (Systemic Sclerosis)
Item Group
SYSTEMIC LUPUS ERITHEMATOSUS (SLE)
Name of Referring Physician
Item
Name of Referring Physician
text
Address
Item
Address
text
Fax
Item
Fax
text
C1549619 (UMLS CUI [1,1])
C0337611 (UMLS CUI [1,2])
C0030664 (UMLS CUI [1,3])
Email
Item
Email
text
Item Group
INITIAL DIAGNOSIS
Item
Has the information requested in this section been submitted with a previous transplant registration?
text
Has the information requested in this section been submitted with a previous transplant registration?
Code List
Has the information requested in this section been submitted with a previous transplant registration?
CL Item
Yes: proceed to “Status of Disease at mobilisation” on page 3 (Yes: proceed to “Status of Disease at mobilisation” on page 3)
CL Item
No: proceed with this section (No: proceed with this section)
Item Group
DIAGNOSTIC CRITERIA FOR SYSTEMIC LUPUS ERYTHEMATOSUS
Item
Malar rash [250]
text
Malar rash [250]
Code List
Malar rash [250]
CL Item
Yes (Yes)
CL Item
No  (No )
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Item
Discoid rash [251]
text
Discoid rash [251]
Code List
Discoid rash [251]
CL Item
Yes  (Yes )
CL Item
No  (No )
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Photosensitivity [253]
text
Photosensitivity [253]
Code List
Photosensitivity [253]
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Oral ulcers [252]
text
Oral ulcers [252]
Code List
Oral ulcers [252]
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Arthritis [226]
text
Arthritis [226]
Code List
Arthritis [226]
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Serositis [225]
text
Serositis [225]
Code List
Serositis [225]
CL Item
Yes (Yes)
CL Item
No  (No )
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
a) Persistent proteinuria >0.5 grams per day or >3+ on urine dipsCheck if quantitation not performed ~OR~ b) Cellular casts – may be red cell, hemoglobulin, granular, tubular or mixed
text
Renal disorder [213]
Code List
a) Persistent proteinuria >0.5 grams per day or >3+ on urine dipsCheck if quantitation not performed ~OR~ b) Cellular casts – may be red cell, hemoglobulin, granular, tubular or mixed
CL Item
Yes (Yes)
CL Item
No  (No )
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Neurologic disorder [221]
text
Neurologic disorder [221]
Code List
Neurologic disorder [221]
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Hematologic disorder [230]
text
Hematologic disorder [230]
Code List
Hematologic disorder [230]
CL Item
Yes (Yes)
CL Item
No  (No )
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Immunologic disorder [254]
text
Immunologic disorder [254]
Code List
Immunologic disorder [254]
CL Item
Yes (Yes)
CL Item
No  (No )
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Antinuclear antibody
text
Antinuclear antibody
Code List
Antinuclear antibody
CL Item
Yes (Yes)
CL Item
No  (No )
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item Group
FIRST LINE THERAPIES
THERAPIES
Item
THERAPIES
boolean
Datestarted
Item
Date started
date
Item
(including antibodies, GF, hormones, etc.)
text
Androgen
Code List
(including antibodies, GF, hormones, etc.)
CL Item
Yes (Yes)
CL Item
No  (No )
CL Item
Unknown (Unknown)
Item
(including antibodies, GF, hormones, etc.)
text
Anti-malarials
Code List
(including antibodies, GF, hormones, etc.)
CL Item
Yes (Yes)
CL Item
No  (No )
CL Item
Unknown (Unknown)
Item
Azathioprine
integer
C0004482 (UMLS CUI [1])
Azathioprin
Code List
Azathioprine
CL Item
no (0)
CL Item
yes (1)
CL Item
unknown (9)
Item
Corticosteroids
text
Corticosteroids
Code List
Corticosteroids
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
Item
Cyclophosphamide
text
Cyclophosphamide
Code List
Cyclophosphamide
CL Item
Yes (Yes)
CL Item
No  (No )
CL Item
Unknown (Unknown)
Item
Cyclosporine
text
Cyclosporine
Code List
Cyclosporine
CL Item
Yes (Yes)
CL Item
No  (No )
CL Item
Unknown (Unknown)
Item
Mycophenolate mofetil
text
Mycophenolate mofetil
Code List
Mycophenolate mofetil
CL Item
Yes (Yes)
CL Item
No  (No )
CL Item
Unknown (Unknown)
Item
Intravenous immune globulin (IVIG)
text
Intravenous immune globulin (IVIG)
Code List
Intravenous immune globulin (IVIG)
CL Item
Yes (Yes)
CL Item
No  (No )
CL Item
Unknown (Unknown)
Item
Other drugs (additional text)
text
Other drugs
Code List
Other drugs (additional text)
CL Item
Yes (Yes)
CL Item
No  (No )
CL Item
Unknown (Unknown)
Item
Lymphocytopheresis
integer
C0024226 (UMLS CUI [1])
Lymphocytopheresis
Code List
Lymphocytopheresis
CL Item
no (1)
CL Item
yes (2)
CL Item
unknown (3)
Item
Plasmapheresis
integer
C0032134 (UMLS CUI [1])
Plasmapheresis
Code List
Plasmapheresis
CL Item
no (1)
CL Item
yes (2)
CL Item
unknown (3)
Other drugs
Item
Other drugs, please specify
boolean
Item Group
DATE OF HSCT
PriorTransplantDate
Item
Date of Transplant
date
C0332152 (UMLS CUI [1,1])
C0332835 (UMLS CUI [1,2])
C2745955 (UMLS CUI [1,3])
C0011008 (UMLS CUI [1,4])
Item
TRANSPLANT TYPE
integer
C3840412 (UMLS CUI [1])
TRANSPLANT TYPE
Code List
TRANSPLANT TYPE
CL Item
Allogeneic (1)
CL Item
Autologous (2)
Date of 1st collection or pheresis
Item
Autologous
date
Item Group
STATUS OF DISEASE AT MOBILISATION
Item
Was lupus nephritis present at anytime prior to mobilisation?
integer
Was lupus nephritis present at anytime prior to mobilisation?
Code List
Was lupus nephritis present at anytime prior to mobilisation?
CL Item
Yes (1)
CL Item
No  (2)
CL Item
Unknown (3)
Item
Renal biopsy done?
integer
Renal biopsy done?
Code List
Renal biopsy done?
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
date of most recent renal biopsy
Item
if renal biopsy done, date of most recent renal biopsy
date
Item
Grade Histology
text
Grade Histology
Code List
Grade Histology
CL Item
I Normal (I Normal)
CL Item
II Mesangial (II Mesangial)
CL Item
III Focal proliferative (III Focal proliferative)
CL Item
IV Diffuse proliferative (IV Diffuse proliferative)
CL Item
V Membranous (V Membranous)
CL Item
Other (Other)
Grade Histology
Item
if other, please specify
text
Item Group
SLEDAI (Systemic Lupus Erythematosus Disease Activity Index) score
Item
Seizures [255]
text
Seizures [255]
Code List
Seizures [255]
CL Item
Yes  (Yes )
CL Item
No  (No )
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Seizures [255]
Item
if yes, Score 8
boolean
Item
Psychosis [256]
integer
Psychosis [256]
Code List
Psychosis [256]
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Psychosis [256]
Item
if yes, Scoe 8
boolean
Item
Organic brain syndrome [257]
integer
Organic brain syndrome [257]
Code List
Organic brain syndrome [257]
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Organic brain syndrome [257]
Item
if yes, Score 8
boolean
Item
Visual disturbance [109]
integer
Visual disturbance [109]
Code List
Visual disturbance [109]
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Visual disturbance [109]
Item
if yes, Score 8
boolean
Item
Cranial nerve disorder [258]
text
Cranial nerve disorder [258]
Code List
Cranial nerve disorder [258]
CL Item
Yes (Yes)
CL Item
No  (No )
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Cranial nerve disorder [258]
Item
if yes, Score 8
boolean
Item
Lupus headache [259]
integer
Lupus headache [259]
Code List
Lupus headache [259]
CL Item
Yes (1)
CL Item
No  (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Lupus headache [259]
Item
if yes, Score 8
boolean
Item
CVA [260]
integer
CVA [260]
Code List
CVA [260]
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CVA [260]
Item
if yes, Score 8
boolean
Item
Vasculitis [234]
integer
Vasculitis [234]
Code List
Vasculitis [234]
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Vasculitis [234]
Item
if yes, Score 8
boolean
Item
Arthritis [226]
integer
Arthritis [226]
Code List
Arthritis [226]
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Arthritis [226]
Item
if yes, Sore 4
boolean
Item
Myositis [261]
integer
Myositis [261]
Code List
Myositis [261]
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Myositis [261]
Item
if yes, Score 4
boolean
Item
Urinary casts [262]
integer
Urinary casts [262]
Code List
Urinary casts [262]
CL Item
Yes (1)
CL Item
No  (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Urinary casts [262]
Item
if yes, Score 4
boolean
Item
Hematuria [263]
integer
Hematuria [263]
Code List
Hematuria [263]
CL Item
Yes (1)
CL Item
No  (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Hematuria [263]
Item
if yes, Score 4
boolean
Item
Proteinuria [264]
integer
Proteinuria [264]
Code List
Proteinuria [264]
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Proteinuria [264]
Item
if yes, Score 4
boolean
Item
Pyuria [265]
integer
Pyuria [265]
Code List
Pyuria [265]
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Pyuria [265]
Item
if yes, score 4
boolean
Item
New rash [249]
integer
New rash [249]
Code List
New rash [249]
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
New rash [249]
Item
if yes, Score 2
boolean
Item
Alopecia [266]
integer
Alopecia [266]
Code List
Alopecia [266]
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Alopecia [266]
Item
if yes, Score 2
boolean
Item
Mucosal ulcers [252]
integer
Mucosal ulcers [252]
Code List
Mucosal ulcers [252]
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Mucosal ulcers [252]
Item
if yes, Score 2
boolean
Item
Pleurisy [267]
integer
Pleurisy [267]
Code List
Pleurisy [267]
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Pleurisy [267]
Item
if yes, Score 2
boolean
Item
Pericarditis [268]
integer
Pericarditis [268]
Code List
Pericarditis [268]
CL Item
Yes (1)
CL Item
No  (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Pericarditis [268]
Item
if yes, Score 2
boolean
Item
Low complement [269]
integer
Low complement [269]
Code List
Low complement [269]
CL Item
Yes (1)
CL Item
No  (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Low complement [269]
Item
if yes, Score 2
boolean
Item
Increased DNA binding [270]
integer
Increased DNA binding [270]
Code List
Increased DNA binding [270]
CL Item
Yes (1)
CL Item
No  (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Increased DNA binding [270]
Item
if yes, Score 2
boolean
Item
>38°C. Exclude infectious cause
integer
Fever [271]
Code List
>38°C. Exclude infectious cause
CL Item
Yes (1)
CL Item
No  (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Fever [271]
Item
if yes, Score 1
boolean
Item
Thrombocytopenia [272]
integer
Thrombocytopenia [272]
Code List
Thrombocytopenia [272]
CL Item
Yes (1)
CL Item
No  (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Thrombocytopenia [272]
Item
if yes, Score 1
boolean
Item
Leukopenia [272]
integer
Leukopenia [272]
Code List
Leukopenia [272]
CL Item
Yes (1)
CL Item
No (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Leukopenia [272]
Item
if yes, Score 1
boolean
Item Group
LABORATORY VALUES
Haemoglobin
Item
Haemoglobin
float
C0019046 (UMLS CUI [1])
Item
Hemoglobin
integer
C0518015 (UMLS CUI [1])
Haemoglobin
Code List
Hemoglobin
CL Item
Not evaluated  (1)
CL Item
Unknown (2)
ESR
Item
Erythrocyte Sedimentation Rate
integer
C1176468 (UMLS CUI [1])
Item
Erythrocyte sedimentation rate
integer
Erythrocyte sedimentation rate
Code List
Erythrocyte sedimentation rate
CL Item
Not evaluated (1)
CL Item
Unknown (2)
platelets
Item
Platelets
integer
C0005821 (UMLS CUI [1])
Item
Platelets
integer
Platelets
Code List
Platelets
CL Item
Not evaluated  (1)
CL Item
Unknown (2)
WBC
Item
WBC
float
C0023508 (UMLS CUI [1])
Item
WBC
integer
WBC
Code List
WBC
CL Item
Not evaluated  (1)
CL Item
Unknown (2)
Serumcreatinine
Item
Serum creatinine
float
Item
Serum creatinine
integer
Serum creatinine
Code List
Serum creatinine
CL Item
Not evaluated  (1)
CL Item
Unknown (2)
Creatinine Clearance
Item
Creatinine Clearance
float
C0373595 (UMLS CUI [1])
Item
Creatinine clearance
integer
Creatinine clearance
Code List
Creatinine clearance
CL Item
Not evaluated  (1)
CL Item
Unknown (2)
Total urinary protein excretion (mg/24 h)
Item
Total urinary protein excretion (mg/24 h)
float
C3897352 (UMLS CUI [1])
Item
Total urinary protein excretion
integer
Total urinary protein excretion
Code List
Total urinary protein excretion
CL Item
Not evaluated  (1)
CL Item
Unknown (2)
Item
CH50 Complement reduced
integer
CH50 Complement reduced
Code List
CH50 Complement reduced
CL Item
No (1)
CL Item
Yes  (2)
CL Item
Not evaluated  (3)
CL Item
Unknown (4)
Item
Complement component C3 reduced
integer
Complement component reduced
Code List
Complement component C3 reduced
CL Item
No (1)
CL Item
Yes  (2)
CL Item
Not evaluated  (3)
CL Item
Unknown (4)
Item
Complement component C4 reduced
text
Complement component reduced
Code List
Complement component C4 reduced
CL Item
No (No)
CL Item
Yes  (Yes )
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Item
Antibodies studied
text
Antibodies studied
Code List
Antibodies studied
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
Item
Antibodies studied, if yes
integer
anti-dsDNA
Code List
Antibodies studied, if yes
CL Item
Normal  (1)
CL Item
Elevated  (2)
CL Item
Not evaluated  (3)
CL Item
Unknown (4)
Item
anti-cardiolipin IgG
integer
anti-cardiolipin IgG
Code List
anti-cardiolipin IgG
CL Item
Normal  (1)
CL Item
Elevated  (2)
CL Item
Not evaluated  (3)
CL Item
Unknown (4)
Item
anti-cardiolipin IgM
integer
anti-cardiolipin IgM
Code List
anti-cardiolipin IgM
CL Item
Normal  (1)
CL Item
Elevated  (2)
CL Item
Not evaluated  (3)
CL Item
Unknown (4)
Item
antinuclear antibody (ANA) test
integer
antinuclear antibody (ANA) test
Code List
antinuclear antibody (ANA) test
CL Item
Normal  (1)
CL Item
Elevated  (2)
CL Item
Not evaluated  (3)
CL Item
Unknown (4)
Item
anti-Sm
integer
anti-Sm
Code List
anti-Sm
CL Item
Normal  (Normal )
CL Item
Elevated  (Elevated )
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Item
anti-SSA (anti-Ro)
integer
anti-SSA (anti-Ro)
Code List
anti-SSA (anti-Ro)
CL Item
Normal  (Normal )
CL Item
Elevated  (Elevated )
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Item
anti-SSB (anti-La)
integer
anti-SSB (anti-La)
Code List
anti-SSB (anti-La)
CL Item
Normal  (Normal )
CL Item
Elevated  (Elevated )
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Item
lupus-anticoagulant
integer
lupus-anticoagulant
Code List
lupus-anticoagulant
CL Item
Normal  (Normal )
CL Item
Elevated  (Elevated )
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Item Group
PATIENT’S SELF ASSESSMENT PRIOR TO MOBILISATION
Item
SF-36 Health Survey completed
integer
SF-36 Health Survey completed
Code List
SF-36 Health Survey completed
CL Item
No (1)
CL Item
Yes (2)
CL Item
Unknown (3)
Item
if yes, score reported as
text
SF-36 Health Survey completed
Code List
if yes, score reported as
CL Item
Transformed Score (range 0-100) (Transformed Score (range 0-100))
CL Item
Raw score (Raw score)
CL Item
Unknown (Unknown)
Physical Functioning
Item
Physical Functioning
float
Item
Physical Functioning
integer
Physical Functioning
Code List
Physical Functioning
CL Item
Not evaluated  (1)
CL Item
Unknown (2)
Role Functioning-Physical
Item
Role Functioning-Physical
float
Item
Role Functioning-Physical
integer
Role Functioning-Physical
Code List
Role Functioning-Physical
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Role Functioning-Emotional
Item
Role Functioning-Emotional
float
Item
Role Functioning-Emotional
integer
Role Functioning-Emotional
Code List
Role Functioning-Emotional
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Social Functioning
Item
Social Functioning
float
Item
Social Functioning
integer
Social Functioning
Code List
Social Functioning
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Bodily Pain
Item
Bodily Pain
float
Item
Bodily Pain
integer
Bodily Pain
Code List
Bodily Pain
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Mental Health
Item
Mental Health
float
Item
Mental Health
integer
Mental Health
Code List
Mental Health
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Vitality:
Item
Vitality:
float
Item
Vitality
integer
Vitality
Code List
Vitality
CL Item
Not evaluated (1)
CL Item
Unknown (2)
General Health
Item
General Health
float
Item
General Health
integer
General Health
Code List
General Health
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item Group
HEALTH ASSESSMENT QUESTIONNAIRE (HAQ)
Item
Did the patient complete a Health Assessment Questionnaire (HAQ)?
integer
Did the patient complete a Health Assessment Questionnaire (HAQ)?
Code List
Did the patient complete a Health Assessment Questionnaire (HAQ)?
CL Item
No (1)
CL Item
Yes (2)
CL Item
Unknown (3)
Patient’s score
Item
Patient’s score
float
Worst possible score
Item
Worst possible score
float
Best possible score
Item
Best possible score
float
Item Group
STATUS OF DISEASE AT HSCT
Item
Was lupus nephritis present at anytime prior to HSCT?
text
Was lupus nephritis present at anytime prior to HSCT?
Code List
Was lupus nephritis present at anytime prior to HSCT?
CL Item
Yes (Yes)
CL Item
No  (No )
CL Item
Unknown (Unknown)
Was lupus nephritis present at anytime prior to HSCT?
Item
if yes, date of most recent renal biopsy
date
Item
Grade Histology
text
Grade Histology
Code List
Grade Histology
CL Item
I Normal (I Normal)
CL Item
II Mesangial (II Mesangial)
CL Item
III Focal proliferative (III Focal proliferative)
CL Item
IV Diffuse proliferative (IV Diffuse proliferative)
CL Item
V Membranous (V Membranous)
CL Item
Other, (Other,)
Item
Renal biopsy done?
text
Renal biopsy done?
Code List
Renal biopsy done?
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
Item Group
ADDITIONAL TREATMENT POST-HSCT
ADDITIONAL DISEASE TREATMENT
Item
ADDITIONAL DISEASE TREATMENT
boolean
Item
ADDITIONAL DISEASE TREATMENT if yes
integer
C1706712 (UMLS CUI [1])
ADDITIONAL DISEASE TREATMENT
Code List
ADDITIONAL DISEASE TREATMENT if yes
CL Item
Planned (planned before HSCT took place) (1)
CL Item
Not planned (for relapse/progression or persistent disease) (2)
Item Group
FORMS TO BE FILLED IN
Item
TYPE OF TRANSPLANT
integer
TYPE OF TRANSPLANT
Code List
TYPE OF TRANSPLANT
CL Item
AUTOgraft, proceed to Autograft form (1)
CL Item
ALLOgraft or Syngeneic graft, proceed to Allograft form (2)
Item Group
SYSTEMIC LUPUS ERITHEMATOSUS (SLE)
Unique Identification Code (UIC)
Item
Unique Identification Code (UIC) (if known)
text
C2348585 (UMLS CUI [1])
Date of this report
Item
Date of this report
date
C1302584 (UMLS CUI [1])
Item
Patient following national / international study / trial
integer
C1997894 (UMLS CUI [1])
Patient following national / international study / trial
Code List
Patient following national / international study / trial
CL Item
no (1)
CL Item
yes (2)
CL Item
unknown (3)
Name of study / trial
Item
Name of study / trial
text
C0008976 (UMLS CUI [1])
Hospital Unique Patient Number
Item
Hospital Unique Patient Number
text
C2348585 (UMLS CUI [1])
Initials
Item
First name(s)_surname(s)
text
C2986440 (UMLS CUI [1])
Date of birth
Item
Date of birth
date
C0421451 (UMLS CUI [1])
Date of last HSCT for this patient
Item
Date of last HSCT for this patient
date
C0472699 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Item Group
PATIENT LAST SEEN
Date last contact
Item
Date of Last Contact or Death
date
C0805839 (UMLS CUI [1])
Item Group
GRAFT VERSUS HOST DISEASE (GvHD) SINCE LAST REPORT
Item
Maximum grade
integer
Maximum grade
Code List
Maximum grade
CL Item
grade 0 (Absent)  (1)
CL Item
grade I  (2)
CL Item
grade II  (3)
CL Item
grade III  (4)
CL Item
grade IV  (5)
CL Item
Not evaluated (6)
Item
If present GvHD, Maximum grade
integer
C0856825 (UMLS CUI [1,1])
C0441800 (UMLS CUI [1,2])
Maximum grade
Code List
If present GvHD, Maximum grade
CL Item
New onset (1)
CL Item
Recurrent (2)
CL Item
Persistent (3)
Item
Reason
integer
Maximum grade
Code List
Reason
CL Item
Tapering (1)
CL Item
DLI (2)
CL Item
Unexplained (3)
Date onset of this episode
Item
Date onset of this episode (if new or recurrent)
date
C0574845 (UMLS CUI [1])
Item
Date onset of this episode
integer
C0574845 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Date onset of this episode
Code List
Date onset of this episode
CL Item
Not applicable (1)
Item
Stage skin
integer
C0856825 (UMLS CUI [1,1])
C1306673 (UMLS CUI [1,2])
C1306673 (UMLS CUI [1,3])
aGvHD Stage Skin
Code List
Stage skin
CL Item
0 (1)
CL Item
1 (2)
CL Item
2 (3)
CL Item
3 (4)
CL Item
4 (5)
CL Item
Not evaluated (6)
CL Item
unknown (7)
Item
Stage liver
integer
C0856825 (UMLS CUI [1,1])
C1306673 (UMLS CUI [1,2])
C0023884 (UMLS CUI [1,3])
aGvHD Stage liver
Code List
Stage liver
CL Item
0 (1)
CL Item
1 (2)
CL Item
2 (3)
CL Item
3 (4)
CL Item
4 (5)
CL Item
Not evaluated (6)
CL Item
unknown (7)
Item
Stage gut
integer
C0856825 (UMLS CUI [1,1])
C1306673 (UMLS CUI [1,2])
C0021853 (UMLS CUI [1,3])
aGvHD stage gut
Code List
Stage gut
CL Item
0 (1)
CL Item
1 (2)
CL Item
2 (3)
CL Item
3 (4)
CL Item
4 (5)
CL Item
Not evaluated (6)
CL Item
unknown (7)
Item
Resolution
integer
C0856825 (UMLS CUI [1,1])
C1514893 (UMLS CUI [1,2])
aGvHD Resolution
Code List
Resolution
CL Item
No  (1)
CL Item
Yes (2)
aGvHD Date of resolution
Item
Date of resolution
date
C0856825 (UMLS CUI [1,1])
C1514893 (UMLS CUI [1,2])
C0011008 (UMLS CUI [1,3])
Item
Presence of cGvHD
text
C0867389 (UMLS CUI [1])
Presence of cGVHD
Code List
Presence of cGvHD
CL Item
No (No)
CL Item
Present continuously since last reported episode (Present continuously since last reported episode)
CL Item
Resolved (Resolved)
CL Item
Yes (Yes)
Date of onset
Item
Date of onset
date
C0574845 (UMLS CUI [1])
Item
Presence of cGVHD if yes
integer
C0867389 (UMLS CUI [1])
Presence of cGVHD
Code List
Presence of cGVHD if yes
CL Item
First episode (1)
CL Item
Recurrence (2)
Date of onset
Item
Date of onset
date
C0574845 (UMLS CUI [1])
Item
cGvHD grade
integer
C0867389 (UMLS CUI [1,1])
C0441800 (UMLS CUI [1,2])
cGvHD grade
Code List
cGvHD grade
CL Item
limited (1)
CL Item
Extensive (2)
Item
Organs affected
integer
C0449642 (UMLS CUI [1])
Organs affected
Code List
Organs affected
CL Item
Skin (1)
CL Item
Gut (2)
CL Item
Liver (3)
CL Item
Mouth (4)
CL Item
Eyes (5)
CL Item
Lung (6)
CL Item
Other, specify (7)
CL Item
Unknown (8)
Date of Resolution
Item
If resolved, specify the date of resolution:
date
C1514893 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Item Group
OTHER COMPLICATIONS SINCE LAST REPORT
Infection related complications
Item
Infection related complications
boolean
C0009450 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
Bacteremia / fungemia / viremia / parasites
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Bacteremia / fungemia / viremia / parasites
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Septic shock
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Septic shock
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
ARDS
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
ARDS
Item
Date Provide different dates for different episodes of the same complication if applicable
date
Multiorgan failure due to infection
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Multiorgan failure due to infection
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Pneumonia
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Pneumonia
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Hepatitis
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Hepatitis
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
CNS infection
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
CNS infection
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Gut infection
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Gut infection
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Skin infection
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Skin infection
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Cystitis
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Cystitis
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Retinitis
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Retinitis
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Other
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Other
Item
Date Provide different dates for different episodes of the same complication if applicable
text
Non infection related complications
Item
Non infection related complications
boolean
C0009566 (UMLS CUI [1])
Item
Idiopathic pneumonia syndrome
integer
C1504431 (UMLS CUI [1])
Idiopathic pneumonia syndrome
Code List
Idiopathic pneumonia syndrome
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Idiopathic pneumonia syndrome
Item
Idiopathic pneumonia syndrome
date
C1504431 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Item
(Check all that are applicable for this period)
integer
C0948441 (UMLS CUI [1])
VOD
Code List
(Check all that are applicable for this period)
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
VOD
Item
VOD
date
Item
(Check all that are applicable for this period)
integer
C0086543 (UMLS CUI [1])
Cataract
Code List
(Check all that are applicable for this period)
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Cataract
Item
Cataract
date
Item
Check all that are applicable for this period Haemorrhagic cystitis, non infectious
text
C0085692 (UMLS CUI [1])
Haemorrhagic cystitis, non infectious
Code List
Check all that are applicable for this period Haemorrhagic cystitis, non infectious
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes )
Haemolytic anaemia due to blood group
Item
Haemolytic anaemia due to blood group
date
Item
Specify: ARDS, non infectious
text
C0035222 (UMLS CUI [1])
ARDS, non infectious
Code List
Specify: ARDS, non infectious
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
ARDS, non infectious
Item
ARDS, non infectious
date
Item
Check all that are applicable for this period)
integer
Multiorgan failure, non infectious
Code List
Check all that are applicable for this period)
CL Item
Yes (1)
CL Item
No  (2)
CL Item
Unknown (3)
Multiorgan failure, non infectious
Item
Multiorgan failure, non infectious
date
Item
(Check all that are applicable for this period HSCT-associated microangiopathy
text
C0155765 (UMLS CUI [1])
HSCT-associated microangiopathy
Code List
(Check all that are applicable for this period HSCT-associated microangiopathy
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
HSCT-associated microangiopathy
Item
HSCT-associated microangiopathy
date
Item
(Check all that are applicable for this period) Renal failure requiring dialysis
text
C0035078 (UMLS CUI [1])
Renal failure requiring dialysis
Code List
(Check all that are applicable for this period) Renal failure requiring dialysis
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Renal failure requiring dialysis
Item
Renal failure requiring dialysis
date
Item
(Check all that are applicable for this period) Haemolytic anaemia due to blood group
integer
C0002878 (UMLS CUI [1])
Haemolytic anaemia due to blood group
Code List
(Check all that are applicable for this period) Haemolytic anaemia due to blood group
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Haemolytic anaemia due to blood group
Item
Haemolytic anaemia due to blood group
date
Item
Check all that are applicable for this period) Aseptic bone necrosis
text
C0158452 (UMLS CUI [1])
Aseptic bone necrosis
Code List
Check all that are applicable for this period) Aseptic bone necrosis
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Aseptic bone necrosis
Item
Aseptic bone necrosis
date
Other
Item
Other type, (Check all that are applicable for this period)
boolean
Other type
Item
Other type
date
Item Group
GRAFT ASSESSMENT AND HAEMOPOIETIC CHIMAERISM
Item
Graft loss
text
C0877042 (UMLS CUI [1])
Graft loss
Code List
Graft loss
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Yes (Yes)
Item
Overall chimaerism
integer
Overall chimaerism
Code List
Overall chimaerism
CL Item
Full (donor >95 %)  (1)
CL Item
Mixed (partial) (2)
CL Item
Autologous reconstitution (recipient >95 %)  (3)
CL Item
Aplasia (4)
CL Item
Not evaluated (5)
Date of test
Item
Date of test (Indicate the date(s) and results of all tests done for all donors. Split the results by donor and by the cell type on which the test was performed if applicable. Copy this table as many times as necessary.)
date
C2826247 (UMLS CUI [1])
Identification
Item
Identification of donor or Cord Blood Unit given by the centre
text
C1718162 (UMLS CUI [1])
Number in the infusion order
Item
Number in the infusion order (if applicable) (Indicate the date(s) and results of all tests done for all donors. Split the results by donor and by the cell type on which the test was performed if applicable. Copy this table as many times as necessary.)
text
C0237753 (UMLS CUI [1])
Item
Number in the infusion order
integer
Number in the infusion order
Code List
Number in the infusion order
CL Item
N/A (1)
Bone marrow
Item
Cell type on which test was performed (% Donor Cells): BM
float
C0005953 (UMLS CUI [1])
PB mononuclear cells (PBMC)
Item
Cell type on which test was performed (% Donor cells): PB mononuclear cells (PBMC)
float
C1321301 (UMLS CUI [1])
T-cell
Item
Cell type on which test was performed (% Donor cells):
float
Red blood cells
Item
Cell type on which test was performed (% Donor cells): Red blood cells
float
C0014772 (UMLS CUI [1])
Monocytes
Item
Cell type on which test was performed (% Donor cells): Monocytes
float
C0026473 (UMLS CUI [1])
PMNs (neutrophils)
Item
Cell type on which test was performed (% Donor cells): PMNs (neutrophils)
float
C0200633 (UMLS CUI [1])
Lymphocytes, NOS
Item
Cell type on which test was performed (% Donor cells): Lymphocytes, NOS
float
C0024264 (UMLS CUI [1])
Myeloid cells, NOS
Item
Cell type on which test was performed (% Donor cells): Myeloid cells, NOS
float
C0887899 (UMLS CUI [1])
Other
Item
Cell type on which test was performed
text
Item
Test used
integer
C0022885 (UMLS CUI [1])
Laboratory tests
Code List
Test used
CL Item
ABO group (ABO group)
CL Item
Cytogenetic (Cytogenetic)
CL Item
FISH (FISH)
CL Item
Molecular (Molecular)
CL Item
Other (Other)
CL Item
unknown (unknown)
Item
SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
integer
SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
Code List
SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
CL Item
Previously reported (1)
CL Item
Yes (2)
CL Item
No at date of this follow-up (3)
SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
Item
if yes, date of diagnosis
date
Item
Diagnosis
text
Diagnosis
Code List
Diagnosis
CL Item
AML  (AML )
CL Item
MDS  (MDS )
CL Item
Lymphoproliferative disorder (Lymphoproliferative disorder)
CL Item
Other (Other)
Item Group
ADDITIONAL THERAPIES SINCE LAST FOLLOW UP
Item
Treatment given since last report
text
C1706712 (UMLS CUI [1])
Additional treatment
Code List
Treatment given since last report
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Date started
Item
if yes treatment given since last report
date
Item
If yes: Cellular therapy (One cell therapy regimen is defined as any number of infusions given within 10 weeks for the same indication. If more than one regimen of cell therapy has been given since last report, copy this section and complete it as many times as necessary.)
integer
C0302189 (UMLS CUI [1])
Cellular therapy
Code List
If yes: Cellular therapy (One cell therapy regimen is defined as any number of infusions given within 10 weeks for the same indication. If more than one regimen of cell therapy has been given since last report, copy this section and complete it as many times as necessary.)
CL Item
No  (1)
CL Item
Yes (Mark disease status before this cellular therapy) (2)
CL Item
Unknown (3)
Item
Disease status before this cellular therapy
integer
C0012634 (UMLS CUI [1])
Disease status before this cellular therapy
Code List
Disease status before this cellular therapy
CL Item
CR (CR)
CL Item
Not evaluated (Not evaluated)
CL Item
Not in CR (Not in CR)
Item
Type of cells
text
Type of cells
Code List
Type of cells
CL Item
Donor lymphocyte infusion (DLI) (Donor lymphocyte infusion (DLI))
CL Item
Mesenchymal cells (Mesenchymal cells)
CL Item
Other (Other)
CL Item
Unknown (Unknown)
Type of cells
Item
If other
text
Item Group
Number of cells infused by type
Item
Number of Nucleated cells infused (DLI only)
integer
C1180059 (UMLS CUI [1])
Nucleated cells
Code List
Number of Nucleated cells infused (DLI only)
CL Item
Number (1)
CL Item
Not evaluated (2)
CL Item
Unknown (3)
CD 34+
Item
specify the number of cells infused by type: CD 34+
text
C3538723 (UMLS CUI [1])
Item
If DLI, specify the number of cells infused by type: CD 34+
text
C3538723 (UMLS CUI [1])
CD 34+
Code List
If DLI, specify the number of cells infused by type: CD 34+
CL Item
Evaluated (Evaluated)
CL Item
Not Evaluated (Not Evaluated)
CL Item
Unknown (Unknown)
CD 3+
Item
specify the number of cells infused by type: CD 3+
float
C3542405 (UMLS CUI [1])
Item
If DLI, specify the number of cells infused by type: CD 3+
text
C3542405 (UMLS CUI [1])
CD 3+
Code List
If DLI, specify the number of cells infused by type: CD 3+
CL Item
Evaluated  (Evaluated )
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Total number of cells infused (non DLI only)
integer
C0007584 (UMLS CUI [1])
All cells
Code List
Total number of cells infused (non DLI only)
CL Item
Number (1)
CL Item
Not evaluated (2)
CL Item
Unknown (3)
Chronological number
Item
Chronological number of this cell therapy for this patient
float
C2348184 (UMLS CUI [1])
Item
Indication (check all that apply)
text
C3146298 (UMLS CUI [1,1])
C0302189 (UMLS CUI [1,2])
Indication
Code List
Indication (check all that apply)
CL Item
Loss/decreased chimaerism (Loss/decreased chimaerism)
CL Item
Mixed chimaerism (Mixed chimaerism)
CL Item
Other (Other)
CL Item
Planned/ protocol (Planned/ protocol)
CL Item
Prophylactic (Prophylactic)
CL Item
Treatment for disease (Treatment for disease)
CL Item
Treatment of GvHD (Treatment of GvHD)
CL Item
Treatment PTLD, EBV, lymphoma (Treatment PTLD, EBV, lymphoma)
CL Item
Treatment viral infection (Treatment viral infection)
Number of Infusions
Item
Number of Infusions (within 10 weeks) (count only infusions that are part of same regimen and given for the same indication)
float
C2348184 (UMLS CUI [1,1])
C1289919 (UMLS CUI [1,2])
Item
Maximum grade
integer
Maximum grade
Code List
Maximum grade
CL Item
grade 0 (absent)  (1)
CL Item
grade 1  (2)
CL Item
grade 2 (3)
CL Item
grade 3  (4)
CL Item
grade 4  (5)
CL Item
present, grade unknown (6)
Item
Disease treatment (apart from donor cell infusion or other type of cell therapy)
integer
C0087111 (UMLS CUI [1])
Disease treatment
Code List
Disease treatment (apart from donor cell infusion or other type of cell therapy)
CL Item
No (1)
CL Item
Yes: Planned (planned before HSCT took place) (2)
CL Item
Yes: Not planned (for relapse/progression or persistent disease) (3)
Item Group
FIRST EVIDENCE OF DISEASE WORSENING SINCE LAST HSCT
Item
EVIDENCE OF DISEASE ACTIVITY
text
EVIDENCE OF DISEASE ACTIVITY
Code List
EVIDENCE OF DISEASE ACTIVITY
CL Item
Continuous worsening since HSCT (Continuous worsening since HSCT)
CL Item
No (No)
CL Item
Previously reported (Previously reported)
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
EVIDENCE OF DISEASE ACTIVITY
Item
Date First Noted (mm-dd-yyyy)
date
Item Group
LAST DISEASE AND PATIENT STATUS
Item
Seizures [255]
text
Seizures
Code List
Seizures [255]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Psychosis [256]
text
Psychosis [256]
Code List
Psychosis [256]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Organic brain syndrome [257]
text
Organic brain syndrome [257]
Code List
Organic brain syndrome [257]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Visual disturbance [109]
text
Visual disturbance [109]
Code List
Visual disturbance [109]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Cranial nerve disorder [258]
text
Cranial nerve disorder [258]
Code List
Cranial nerve disorder [258]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Lupus headache [259]
text
Lupus headache [259]
Code List
Lupus headache [259]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
CVA [260]
text
CVA [260]
Code List
CVA [260]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Vasculitis [234]
text
Vasculitis [234]
Code List
Vasculitis [234]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Arthritis [226]
text
Arthritis [226]
Code List
Arthritis [226]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Myositis [261]
text
Myositis [261]
Code List
Myositis [261]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Urinary casts [262]
text
Urinary casts [262]
Code List
Urinary casts [262]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Hematuria [263]
text
Hematuria [263]
Code List
Hematuria [263]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Proteinuria [264]
text
Proteinuria [264]
Code List
Proteinuria [264]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Pyuria [265]
text
Pyuria [265]
Code List
Pyuria [265]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
New rash [249]
text
New rash [249]
Code List
New rash [249]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Alopecia [266]
text
Alopecia [266]
Code List
Alopecia [266]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Mucosal ulcers [252]
text
Mucosal ulcers [252]
Code List
Mucosal ulcers [252]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Pleurisy [267]
text
Pleurisy [267]
Code List
Pleurisy [267]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Pericarditis [268]
text
Pericarditis [268]
Code List
Pericarditis [268]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Low complement [269]
text
Low complement [269]
Code List
Low complement [269]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Increased DNA binding [270]
text
Increased DNA binding [270]
Code List
Increased DNA binding [270]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Fever [271]
text
Fever [271]
Code List
Fever [271]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Thrombocytopenia [272]
text
Thrombocytopenia [272]
Code List
Thrombocytopenia [272]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Leukopenia [272]
text
Leukopenia [272]
Code List
Leukopenia [272]
CL Item
Yes  (Yes )
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item Group
LABORATORY VALUES
Haemoglobin Blood
Item
Haemoglobin
float
C0518015 (UMLS CUI [1])
Item
Haemoglobin
text
Haemoglobin
Code List
Haemoglobin
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Platelets
Item
Platelet count
float
C0005821 (UMLS CUI [1])
Item
Platelets
text
Platelets
Code List
Platelets
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
WBC
Item
WBC
float
Item
WBC
text
WBC
Code List
WBC
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
ESR
Item
Erythrocyte Sedimentation Rate
float
C1176468 (UMLS CUI [1])
Item
Erythrocyte sedimentation rate
text
Erythrocyte sedimentation rate
Code List
Erythrocyte sedimentation rate
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Creatinine, Serum
Item
Serum creatinine
float
C0201976 (UMLS CUI [1])
Item
Serum creatinine
text
Serum creatinine
Code List
Serum creatinine
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Creatinine Clearance
Item
Creatinine Clearance
float
C0373595 (UMLS CUI [1])
Creatinine clearance
Code List
Creatinine clearance
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Total urinary protein excretion (mg/24 h)
Item
Total urinary protein excretion (mg/24 h)
float
C3897352 (UMLS CUI [1])
Item
Total urinary protein excretion
text
Total urinary protein excretion
Code List
Total urinary protein excretion
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
CH50 Complement reduced
integer
CH50 Complement reduced
Code List
CH50 Complement reduced
CL Item
No (1)
CL Item
Yes (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Item
Complement component C3 reduced
integer
Complement component reduced
Code List
Complement component C3 reduced
CL Item
No (1)
CL Item
Yes (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Item
Complement component C4 reduced
text
Complement component reduced
Code List
Complement component C4 reduced
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Antibodies studied
integer
Antibodies studied
Code List
Antibodies studied
CL Item
No  (1)
CL Item
Yes (2)
CL Item
Unknown (3)
Item
Antibodies studied, if yes
text
anti-dsDNA
Code List
Antibodies studied, if yes
CL Item
Normal  (Normal )
CL Item
Elevated  (Elevated )
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Item
Antibodies studied, if yes
text
anti-cardiolipin IgG
Code List
Antibodies studied, if yes
CL Item
Normal  (Normal )
CL Item
Elevated  (Elevated )
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Item
Antibodies studied, if yes
text
anti-cardiolipin IgM
Code List
Antibodies studied, if yes
CL Item
Normal  (Normal )
CL Item
Elevated  (Elevated )
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Item
Antibodies studied, if yes
text
antinuclear antibody (ANA) test
Code List
Antibodies studied, if yes
CL Item
Normal  (Normal )
CL Item
Elevated  (Elevated )
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Item
anti-Sm Antibodies studied, if yes
text
anti-Sm
Code List
anti-Sm Antibodies studied, if yes
CL Item
Normal  (Normal )
CL Item
Elevated  (Elevated )
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Item
anti-SSA (anti-Ro) Antibodies studied, if yes
text
anti-SSA (anti-Ro)
Code List
anti-SSA (anti-Ro) Antibodies studied, if yes
CL Item
Normal  (Normal )
CL Item
Elevated  (Elevated )
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Item
anti-SSB (anti-La) Antibodies studied, if yes
text
anti-SSB (anti-La)
Code List
anti-SSB (anti-La) Antibodies studied, if yes
CL Item
Normal  (Normal )
CL Item
Elevated  (Elevated )
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Item
lupus-anticoagulant Antibodies studied, if yes
text
lupus-anticoagulant
Code List
lupus-anticoagulant Antibodies studied, if yes
CL Item
Normal  (Normal )
CL Item
Elevated  (Elevated )
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Item Group
PATIENT’S SELF ASSESSMENT AT THIS FOLLOW UP
Item
SF-36 Health Survey completed
text
SF-36 Health Survey completed
Code List
SF-36 Health Survey completed
CL Item
No  (No )
CL Item
Yes  (Yes )
CL Item
Unknown (Unknown)
Item
SF-36 score reported as
text
SF-36 score reported as
Code List
SF-36 score reported as
CL Item
Transformed Score  (Transformed Score )
CL Item
Raw score  (Raw score )
CL Item
Unknown SCORE (range 0-100) (Unknown SCORE (range 0-100))
Physical Functioning
Item
Physical Functioning
float
Item
Physical Functioning
text
Physical Functioning
Code List
Physical Functioning
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Role Functioning-Physical
Item
Role Functioning-Physical
float
Item
Role Functioning-Physical
integer
Role Functioning-Physical
Code List
Role Functioning-Physical
CL Item
Not evaluated  (1)
CL Item
Unknown (2)
Role Functioning-Emotional
Item
Role Functioning-Emotional
float
Item
Role Functioning-Emotional
integer
Role Functioning-Emotional
Code List
Role Functioning-Emotional
CL Item
Not evaluated  (1)
CL Item
Unknown (2)
Social Functioning
Item
Social Functioning
float
Item
Social Functioning
integer
Social Functioning
Code List
Social Functioning
CL Item
Not evaluated  (1)
CL Item
Unknown (2)
Bodily Pain
Item
Bodily Pain
float
Item
Bodily Pain
integer
Bodily Pain
Code List
Bodily Pain
CL Item
Not evaluated  (1)
CL Item
Unknown (2)
Mental Health
Item
Mental Health
float
Item
Mental Health
integer
Mental Health
Code List
Mental Health
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Vitality
Item
Vitality
float
Item
Vitality
integer
Vitality
Code List
Vitality
CL Item
Not evaluated (1)
CL Item
Unknown (2)
General Health
Item
General Health
float
Item
General Health
integer
General Health
Code List
General Health
CL Item
Not evaluated (1)
CL Item
Unknown (2)
Item
Did the patient complete a Health Assessment Questionnaire (HAQ)?
integer
Did the patient complete a Health Assessment Questionnaire (HAQ)?
Code List
Did the patient complete a Health Assessment Questionnaire (HAQ)?
CL Item
No (1)
CL Item
Yes (2)
CL Item
Unknown (3)
Patient’s score
Item
Patient’s score
float
Worst possible score
Item
Worst possible score
float
Best possible score
Item
Best possible score
float
Item
Has patient or partner become pregnant after this HSCT?
text
Has patient or partner become pregnant after this HSCT?
Code List
Has patient or partner become pregnant after this HSCT?
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
Item
Survival Status
integer
C1148433 (UMLS CUI [1])
Survival Status
Code List
Survival Status
CL Item
alive (0)
CL Item
dead (1)
Item
Type of score used PERFORMANCE SCORE (if alive)
integer
Type of score used
Code List
Type of score used PERFORMANCE SCORE (if alive)
CL Item
Karnofsky (1)
CL Item
Lansky (2)
Item
Score
integer
C1518965 (UMLS CUI [1])
Performance score
Code List
Score
CL Item
100 (Normal, NED) (1)
CL Item
10 (Moribund) (10)
CL Item
Not evaluated (11)
CL Item
Unknown (12)
CL Item
90 (Normal activity)  (2)
CL Item
80 (Normal with effort) (3)
CL Item
70 (Cares for self) (4)
CL Item
60 (Requires occasional assistance) (5)
CL Item
50 (Requires assistance) (6)
CL Item
40 (Disabled) (7)
CL Item
30 (Severely disabled) (8)
CL Item
20 (Very sick) (9)
Item
Cause of death (if dead)
integer
C0007465 (UMLS CUI [1])
Cause of death
Code List
Cause of death (if dead)
CL Item
Relapse or progression (1)
CL Item
Secondary malignancy (including lymphoproliferative disease) (2)
CL Item
HSCT related cause  (3)
CL Item
Unknown (4)
CL Item
Other (5)
Item
GvHD
text
C0007465 (UMLS CUI [1,1])
C0018133 (UMLS CUI [1,2])
GvHD
Code List
GvHD
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Item
Interstitial Pneumonitis
text
C0007465 (UMLS CUI [1,1])
C0206061 (UMLS CUI [1,2])
Interstitial Pneumonitis
Code List
Interstitial Pneumonitis
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Item
Pulmonary toxicity
text
C0007465 (UMLS CUI [1,1])
C0919924 (UMLS CUI [1,2])
Pulmonary toxicity
Code List
Pulmonary toxicity
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Item
Infection
integer
Infection
Code List
Infection
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Infection
integer
Infection HSCT
Code List
Infection
CL Item
bacterial (1)
CL Item
viral (2)
CL Item
fungal (3)
CL Item
parasitic (4)
CL Item
unknown (5)
Item
Rejection / poor graft function
integer
C0018129 (UMLS CUI [1])
Rejection / poor graft function
Code List
Rejection / poor graft function
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Veno-Occlusive disease (VOD)
integer
C0007465 (UMLS CUI [1,1])
C0948441 (UMLS CUI [1,2])
Veno-Occlusive disease (VOD)
Code List
Veno-Occlusive disease (VOD)
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Haemorrhage
integer
C0007465 (UMLS CUI [1,1])
C0019080 (UMLS CUI [1,2])
Haemorrhage
Code List
Haemorrhage
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Cardiac toxicity
integer
C0007465 (UMLS CUI [1,1])
C0876994 (UMLS CUI [1,2])
Cardiac toxicity
Code List
Cardiac toxicity
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Central nervous system toxicity
integer
C0007465 (UMLS CUI [1,1])
C3160947 (UMLS CUI [1,2])
Central nervous system toxicity
Code List
Central nervous system toxicity
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Gastro intestinal toxicity
integer
C0007465 (UMLS CUI [1,1])
C1142499 (UMLS CUI [1,2])
Gastro intestinal toxicity
Code List
Gastro intestinal toxicity
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Skin toxicity
integer
C1167791 (UMLS CUI [1])
Skin toxicity
Code List
Skin toxicity
CL Item
Yes  (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Renal failure
integer
C1533077 (UMLS CUI [1])
Renal failure
Code List
Renal failure
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Multiple organ failure
integer
Multiple organ failure
Code List
Multiple organ failure
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Other related cause
Item
Other related cause
boolean
Item Group
ADDITIONAL NOTES IF APPLICABLE
Comments
Item
Comments
text
IDENTIFICATION & SIGNATURE
Item
IDENTIFICATION & SIGNATURE
text
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