ID
16512
Beschrijving
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
Trefwoorden
Versies (3)
- 21-07-16 21-07-16 -
- 10-08-16 10-08-16 -
- 17-09-21 17-09-21 -
Geüploaded op
21 juli 2016
DOI
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Licentie
Creative Commons BY-NC 3.0
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19ppEBMT SLE 16SLE
19ppEBMT SLE 16SLE
- StudyEvent: ODM
Beschrijving
GENERAL INFORMATION
Beschrijving
Unique Identification Code (UIC)
Datatype
text
Alias
- UMLS CUI [1]
- C2348585
Beschrijving
Hospital Unique Patient Number or Code
Datatype
text
Alias
- UMLS CUI [1]
- C1827636
Beschrijving
Initials
Datatype
text
Alias
- UMLS CUI [1]
- C2986440
Beschrijving
Date of birth
Datatype
date
Alias
- UMLS CUI [1]
- C0421451
Beschrijving
Sex
Datatype
text
Alias
- UMLS CUI [1]
- C0079399
Beschrijving
ABO Group
Datatype
text
Beschrijving
Rh factor
Datatype
integer
Alias
- UMLS CUI [1]
- C0035403
Beschrijving
GENERAL INFORMATION
Beschrijving
Date of diagnosis
Datatype
date
Alias
- UMLS CUI [1]
- C2316983
Beschrijving
Primary Disease Diagnosis
Datatype
text
Alias
- UMLS CUI [1]
- C0277554
Beschrijving
SYSTEMIC LUPUS ERITHEMATOSUS (SLE)
Beschrijving
INITIAL DIAGNOSIS
Beschrijving
DIAGNOSTIC CRITERIA FOR SYSTEMIC LUPUS ERYTHEMATOSUS
Beschrijving
Fixed erythema, flat or raised, over the malar eminences, tending to spare the nasolabial folds
Datatype
text
Beschrijving
Erythematous raised patches with adherent keratotic scaling and follicular plugging; atrophic scarring may occur in older lesions
Datatype
text
Beschrijving
Skin rash as a result of unusual reaction to sunlight, by patient history or physician observation
Datatype
text
Beschrijving
Oral or nasopharyngeal ulceration, usually painless, observed by a physician
Datatype
text
Beschrijving
Non-erosive arthritis involving two or more peripheral joints, characterized by tenderness, swelling or effusion
Datatype
text
Beschrijving
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
Datatype
text
Beschrijving
Renal disorder [213]
Datatype
text
Beschrijving
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
Datatype
text
Beschrijving
a) Hemolytic anemia – with reticulocytosis ~OR~ b) Thrombocytopenia – <100,000/mm 3 platelets in the absence of offending drugs
Datatype
text
Beschrijving
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
Datatype
text
Beschrijving
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.
Datatype
text
Beschrijving
FIRST LINE THERAPIES
Beschrijving
THERAPIES
Datatype
boolean
Beschrijving
Datestarted
Datatype
date
Beschrijving
Androgen
Datatype
text
Beschrijving
Anti-malarials
Datatype
text
Beschrijving
Azathioprin
Datatype
integer
Alias
- UMLS CUI [1]
- C0004482
Beschrijving
Corticosteroids
Datatype
text
Beschrijving
Cyclophosphamide
Datatype
text
Beschrijving
Cyclosporine
Datatype
text
Beschrijving
Mycophenolate mofetil
Datatype
text
Beschrijving
Intravenous immune globulin (IVIG)
Datatype
text
Beschrijving
Other drugs
Datatype
text
Beschrijving
Lymphocytopheresis
Datatype
integer
Alias
- UMLS CUI [1]
- C0024226
Beschrijving
Plasmapheresis
Datatype
integer
Alias
- UMLS CUI [1]
- C0032134
Beschrijving
Other drugs
Datatype
boolean
Beschrijving
DATE OF HSCT
Beschrijving
PriorTransplantDate
Datatype
date
Alias
- UMLS CUI [1,1]
- C0332152
- UMLS CUI [1,2]
- C0332835
- UMLS CUI [1,3]
- C2745955
- UMLS CUI [1,4]
- C0011008
Beschrijving
TRANSPLANT TYPE
Datatype
integer
Alias
- UMLS CUI [1]
- C3840412
Beschrijving
Date of 1st collection or pheresis
Datatype
date
Beschrijving
STATUS OF DISEASE AT MOBILISATION
Beschrijving
Was lupus nephritis present at anytime prior to mobilisation?
Datatype
integer
Beschrijving
Renal biopsy done?
Datatype
integer
Beschrijving
date of most recent renal biopsy
Datatype
date
Beschrijving
Grade Histology
Datatype
text
Beschrijving
Grade Histology
Datatype
text
Beschrijving
SLEDAI (Systemic Lupus Erythematosus Disease Activity Index) score
Beschrijving
Recent onset (last 10 days). Exclude metabolic, infectious or drug cause, or seizure due to past irreversible CNS damage.
Datatype
text
Beschrijving
Seizures [255]
Datatype
boolean
Beschrijving
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.
Datatype
integer
Beschrijving
Psychosis [256]
Datatype
boolean
Beschrijving
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.
Datatype
integer
Beschrijving
Organic brain syndrome [257]
Datatype
boolean
Beschrijving
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.
Datatype
integer
Beschrijving
Visual disturbance [109]
Datatype
boolean
Beschrijving
New onset of sensory or motor neuropathy involving cranial nerves. Include vertigo due to lupus.
Datatype
text
Beschrijving
Cranial nerve disorder [258]
Datatype
boolean
Beschrijving
Severe, persistent headache: may be migrainous, but must be nonresponsive to narcotic analgesia.
Datatype
integer
Beschrijving
Lupus headache [259]
Datatype
boolean
Beschrijving
New onset of cerebrovascular accident(s). Exclude arteriosclerosis or hypertensive causes.
Datatype
integer
Beschrijving
CVA [260]
Datatype
boolean
Beschrijving
Ulceration, gangrene, tender finger nodules, periungual infarction, splinter hemorrhages or biopsy or angiogram proof of vasculitis.
Datatype
integer
Beschrijving
Vasculitis [234]
Datatype
boolean
Beschrijving
More than 2 joints with pain and signs of inflammation (i.e., tenderness, swelling or effusion).
Datatype
integer
Beschrijving
Arthritis [226]
Datatype
boolean
Beschrijving
Proximal muscle aching/weakness, associated with elevated creatine phosphokinase/aldolase or electromyogram changes or a biopsy showing myositis.
Datatype
integer
Beschrijving
Myositis [261]
Datatype
boolean
Beschrijving
Heme-granular or red blood cell casts.
Datatype
integer
Beschrijving
Urinary casts [262]
Datatype
boolean
Beschrijving
>5 red blood cells/high power field. Exclude stone, infection or other cause.
Datatype
integer
Beschrijving
Hematuria [263]
Datatype
boolean
Beschrijving
>0.5 gm/24 hours. New onset or recent increase of >0.5 gm/24 hours
Datatype
integer
Beschrijving
Proteinuria [264]
Datatype
boolean
Beschrijving
>5 white blood cells/high power field. Exclude infection
Datatype
integer
Beschrijving
Pyuria [265]
Datatype
boolean
Beschrijving
Ongoing inflammatory lupus rash
Datatype
integer
Beschrijving
New rash [249]
Datatype
boolean
Beschrijving
Ongoing abnormal, patchy or diffuse loss of hair due to active lupus.
Datatype
integer
Beschrijving
Alopecia [266]
Datatype
boolean
Beschrijving
Ongoing oral or nasal ulcerations due to active lupus
Datatype
integer
Beschrijving
Mucosal ulcers [252]
Datatype
boolean
Beschrijving
Classic and severe pleuritic chest pain or pleural rub or effusion or new pleural thickening due to lupus.
Datatype
integer
Beschrijving
Pleurisy [267]
Datatype
boolean
Beschrijving
Classic and severe pericardial pain or rub or effusion or electrocardiogram confirmation.
Datatype
integer
Beschrijving
Pericarditis [268]
Datatype
boolean
Beschrijving
Low complement [269]
Datatype
integer
Beschrijving
Low complement [269]
Datatype
boolean
Beschrijving
>25% binding by Farr assay or above normal range for testing laboratory.
Datatype
integer
Beschrijving
Increased DNA binding [270]
Datatype
boolean
Beschrijving
Fever [271]
Datatype
integer
Beschrijving
Fever [271]
Datatype
boolean
Beschrijving
<100,000 platelets/mm 3 (x 10 9 /L).
Datatype
integer
Beschrijving
Thrombocytopenia [272]
Datatype
boolean
Beschrijving
<3,000 white blood cells/mm 3 (x 10 9 /L). Exclude drug causes.
Datatype
integer
Beschrijving
Leukopenia [272]
Datatype
boolean
Beschrijving
LABORATORY VALUES
Beschrijving
Haemoglobin
Datatype
float
Maateenheden
- g/dL
Alias
- UMLS CUI [1]
- C0019046
Beschrijving
Haemoglobin
Datatype
integer
Alias
- UMLS CUI [1]
- C0518015
Beschrijving
ESR
Datatype
integer
Maateenheden
- mm/hr
Alias
- UMLS CUI [1]
- C1176468
Beschrijving
Erythrocyte sedimentation rate
Datatype
integer
Beschrijving
platelets
Datatype
integer
Maateenheden
- x10^9 /l
Alias
- UMLS CUI [1]
- C0005821
Beschrijving
Platelets
Datatype
integer
Beschrijving
WBC
Datatype
float
Maateenheden
- x10^9/l
Alias
- UMLS CUI [1]
- C0023508
Beschrijving
WBC
Datatype
integer
Beschrijving
Serumcreatinine
Datatype
float
Beschrijving
Serum creatinine
Datatype
integer
Beschrijving
Creatinine Clearance
Datatype
float
Maateenheden
- mL/min
Alias
- UMLS CUI [1]
- C0373595
Beschrijving
Creatinine clearance
Datatype
integer
Beschrijving
Total urinary protein excretion (mg/24 h)
Datatype
float
Alias
- UMLS CUI [1]
- C3897352
Beschrijving
Total urinary protein excretion
Datatype
integer
Beschrijving
CH50 Complement reduced
Datatype
integer
Beschrijving
Complement component reduced
Datatype
integer
Beschrijving
Complement component reduced
Datatype
text
Beschrijving
Antibodies studied
Datatype
text
Beschrijving
anti-dsDNA
Datatype
integer
Beschrijving
anti-cardiolipin IgG
Datatype
integer
Beschrijving
anti-cardiolipin IgM
Datatype
integer
Beschrijving
antinuclear antibody (ANA) test
Datatype
integer
Beschrijving
anti-Sm
Datatype
integer
Beschrijving
anti-SSA (anti-Ro)
Datatype
integer
Beschrijving
anti-SSB (anti-La)
Datatype
integer
Beschrijving
lupus-anticoagulant
Datatype
integer
Beschrijving
PATIENT’S SELF ASSESSMENT PRIOR TO MOBILISATION
Beschrijving
SF-36 Health Survey completed
Datatype
integer
Beschrijving
SF-36 Health Survey completed
Datatype
text
Beschrijving
Physical Functioning
Datatype
float
Beschrijving
Physical Functioning
Datatype
integer
Beschrijving
Role Functioning-Physical
Datatype
float
Beschrijving
Role Functioning-Physical
Datatype
integer
Beschrijving
Role Functioning-Emotional
Datatype
float
Beschrijving
Role Functioning-Emotional
Datatype
integer
Beschrijving
Social Functioning
Datatype
float
Beschrijving
Social Functioning
Datatype
integer
Beschrijving
Bodily Pain
Datatype
float
Beschrijving
Bodily Pain
Datatype
integer
Beschrijving
Mental Health
Datatype
float
Beschrijving
Mental Health
Datatype
integer
Beschrijving
Vitality:
Datatype
float
Beschrijving
Vitality
Datatype
integer
Beschrijving
General Health
Datatype
float
Beschrijving
General Health
Datatype
integer
Beschrijving
HEALTH ASSESSMENT QUESTIONNAIRE (HAQ)
Beschrijving
Did the patient complete a Health Assessment Questionnaire (HAQ)?
Datatype
integer
Beschrijving
Patient’s score
Datatype
float
Beschrijving
Worst possible score
Datatype
float
Beschrijving
Best possible score
Datatype
float
Beschrijving
STATUS OF DISEASE AT HSCT
Beschrijving
Was lupus nephritis present at anytime prior to HSCT?
Datatype
text
Beschrijving
Was lupus nephritis present at anytime prior to HSCT?
Datatype
date
Beschrijving
Grade Histology
Datatype
text
Beschrijving
Renal biopsy done?
Datatype
text
Beschrijving
ADDITIONAL TREATMENT POST-HSCT
Beschrijving
FORMS TO BE FILLED IN
Beschrijving
SYSTEMIC LUPUS ERITHEMATOSUS (SLE)
Beschrijving
Unique Identification Code (UIC)
Datatype
text
Alias
- UMLS CUI [1]
- C2348585
Beschrijving
Date of this report
Datatype
date
Alias
- UMLS CUI [1]
- C1302584
Beschrijving
Patient following national / international study / trial
Datatype
integer
Alias
- UMLS CUI [1]
- C1997894
Beschrijving
Name of study / trial
Datatype
text
Alias
- UMLS CUI [1]
- C0008976
Beschrijving
Hospital Unique Patient Number
Datatype
text
Alias
- UMLS CUI [1]
- C2348585
Beschrijving
Initials
Datatype
text
Alias
- UMLS CUI [1]
- C2986440
Beschrijving
Date of birth
Datatype
date
Alias
- UMLS CUI [1]
- C0421451
Beschrijving
Date of last HSCT for this patient
Datatype
date
Alias
- UMLS CUI [1,1]
- C0472699
- UMLS CUI [1,2]
- C0011008
Beschrijving
PATIENT LAST SEEN
Beschrijving
GRAFT VERSUS HOST DISEASE (GvHD) SINCE LAST REPORT
Beschrijving
Maximum grade
Datatype
integer
Beschrijving
Maximum grade
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0856825
- UMLS CUI [1,2]
- C0441800
Beschrijving
Maximum grade
Datatype
integer
Beschrijving
Date onset of this episode
Datatype
date
Maateenheden
- yyyy/mm/dd
Alias
- UMLS CUI [1]
- C0574845
Beschrijving
Date onset of this episode
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0574845
- UMLS CUI [1,2]
- C0011008
Beschrijving
aGvHD Stage Skin
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0856825
- UMLS CUI [1,2]
- C1306673
- UMLS CUI [1,3]
- C1306673
Beschrijving
aGvHD Stage liver
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0856825
- UMLS CUI [1,2]
- C1306673
- UMLS CUI [1,3]
- C0023884
Beschrijving
aGvHD stage gut
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0856825
- UMLS CUI [1,2]
- C1306673
- UMLS CUI [1,3]
- C0021853
Beschrijving
aGvHD Resolution
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0856825
- UMLS CUI [1,2]
- C1514893
Beschrijving
aGvHD Date of resolution
Datatype
date
Maateenheden
- yyyy/mm/dd
Alias
- UMLS CUI [1,1]
- C0856825
- UMLS CUI [1,2]
- C1514893
- UMLS CUI [1,3]
- C0011008
Beschrijving
Chronic Graft versus Host Disease (cGvHD)
Datatype
text
Alias
- UMLS CUI [1]
- C0867389
Beschrijving
Date of onset
Datatype
date
Alias
- UMLS CUI [1]
- C0574845
Beschrijving
Presence of cGVHD
Datatype
integer
Alias
- UMLS CUI [1]
- C0867389
Beschrijving
Date of onset
Datatype
date
Alias
- UMLS CUI [1]
- C0574845
Beschrijving
cGvHD grade
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0867389
- UMLS CUI [1,2]
- C0441800
Beschrijving
Organs affected
Datatype
integer
Alias
- UMLS CUI [1]
- C0449642
Beschrijving
Date of Resolution
Datatype
date
Alias
- UMLS CUI [1,1]
- C1514893
- UMLS CUI [1,2]
- C0011008
Beschrijving
OTHER COMPLICATIONS SINCE LAST REPORT
Beschrijving
Infection related complications
Datatype
boolean
Alias
- UMLS CUI [1,1]
- C0009450
- UMLS CUI [1,2]
- C0009566
Beschrijving
Bacteremia / fungemia / viremia / parasites
Datatype
text
Beschrijving
Bacteremia / fungemia / viremia / parasites
Datatype
date
Beschrijving
Septic shock
Datatype
text
Beschrijving
Septic shock
Datatype
date
Beschrijving
ARDS
Datatype
text
Beschrijving
ARDS
Datatype
date
Beschrijving
Multiorgan failure due to infection
Datatype
text
Beschrijving
Multiorgan failure due to infection
Datatype
date
Beschrijving
Pneumonia
Datatype
text
Beschrijving
Pneumonia
Datatype
date
Beschrijving
Hepatitis
Datatype
text
Beschrijving
Hepatitis
Datatype
date
Beschrijving
CNS infection
Datatype
text
Beschrijving
CNS infection
Datatype
date
Beschrijving
Gut infection
Datatype
text
Beschrijving
Gut infection
Datatype
date
Beschrijving
Skin infection
Datatype
text
Beschrijving
Skin infection
Datatype
date
Beschrijving
Cystitis
Datatype
text
Beschrijving
Cystitis
Datatype
date
Beschrijving
Retinitis
Datatype
text
Beschrijving
Retinitis
Datatype
date
Beschrijving
Other
Datatype
text
Beschrijving
Other
Datatype
text
Beschrijving
Non infection related complications
Datatype
boolean
Alias
- UMLS CUI [1]
- C0009566
Beschrijving
Idiopathic pneumonia syndrome
Datatype
integer
Alias
- UMLS CUI [1]
- C1504431
Beschrijving
Idiopathic pneumonia syndrome
Datatype
date
Alias
- UMLS CUI [1,1]
- C1504431
- UMLS CUI [1,2]
- C0011008
Beschrijving
VOD
Datatype
integer
Alias
- UMLS CUI [1]
- C0948441
Beschrijving
VOD
Datatype
date
Beschrijving
Cataract
Datatype
integer
Alias
- UMLS CUI [1]
- C0086543
Beschrijving
Cataract
Datatype
date
Beschrijving
Haemorrhagic cystitis, non infectious
Datatype
text
Alias
- UMLS CUI [1]
- C0085692
Beschrijving
Haemolytic anaemia due to blood group
Datatype
date
Beschrijving
ARDS, non infectious
Datatype
text
Alias
- UMLS CUI [1]
- C0035222
Beschrijving
ARDS, non infectious
Datatype
date
Beschrijving
Multiorgan failure, non infectious
Datatype
integer
Beschrijving
Multiorgan failure, non infectious
Datatype
date
Beschrijving
HSCT-associated microangiopathy
Datatype
text
Alias
- UMLS CUI [1]
- C0155765
Beschrijving
HSCT-associated microangiopathy
Datatype
date
Beschrijving
Renal failure requiring dialysis
Datatype
text
Alias
- UMLS CUI [1]
- C0035078
Beschrijving
Renal failure requiring dialysis
Datatype
date
Beschrijving
Haemolytic anaemia due to blood group
Datatype
integer
Alias
- UMLS CUI [1]
- C0002878
Beschrijving
Haemolytic anaemia due to blood group
Datatype
date
Beschrijving
Aseptic bone necrosis
Datatype
text
Alias
- UMLS CUI [1]
- C0158452
Beschrijving
Aseptic bone necrosis
Datatype
date
Beschrijving
Other
Datatype
boolean
Beschrijving
Other type
Datatype
date
Beschrijving
GRAFT ASSESSMENT AND HAEMOPOIETIC CHIMAERISM
Beschrijving
Graft loss
Datatype
text
Alias
- UMLS CUI [1]
- C0877042
Beschrijving
Overall chimaerism
Datatype
integer
Beschrijving
Date of test
Datatype
date
Alias
- UMLS CUI [1]
- C2826247
Beschrijving
Identification
Datatype
text
Alias
- UMLS CUI [1]
- C1718162
Beschrijving
Number in the infusion order
Datatype
text
Alias
- UMLS CUI [1]
- C0237753
Beschrijving
Number in the infusion order
Datatype
integer
Beschrijving
Bone marrow
Datatype
float
Maateenheden
- %
Alias
- UMLS CUI [1]
- C0005953
Beschrijving
PB mononuclear cells (PBMC)
Datatype
float
Maateenheden
- %
Alias
- UMLS CUI [1]
- C1321301
Beschrijving
T-cell
Datatype
float
Maateenheden
- %
Beschrijving
Red blood cells
Datatype
float
Maateenheden
- %
Alias
- UMLS CUI [1]
- C0014772
Beschrijving
Monocytes
Datatype
float
Maateenheden
- %
Alias
- UMLS CUI [1]
- C0026473
Beschrijving
PMNs (neutrophils)
Datatype
float
Maateenheden
- %
Alias
- UMLS CUI [1]
- C0200633
Beschrijving
Lymphocytes, NOS
Datatype
float
Maateenheden
- %
Alias
- UMLS CUI [1]
- C0024264
Beschrijving
Myeloid cells, NOS
Datatype
float
Maateenheden
- %
Alias
- UMLS CUI [1]
- C0887899
Beschrijving
Other
Datatype
text
Beschrijving
Laboratory tests
Datatype
integer
Alias
- UMLS CUI [1]
- C0022885
Beschrijving
SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
Datatype
integer
Beschrijving
SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
Datatype
date
Beschrijving
Diagnosis
Datatype
text
Beschrijving
ADDITIONAL THERAPIES SINCE LAST FOLLOW UP
Beschrijving
Additional treatment
Datatype
text
Alias
- UMLS CUI [1]
- C1706712
Beschrijving
Date started
Datatype
date
Beschrijving
Cellular therapy
Datatype
integer
Alias
- UMLS CUI [1]
- C0302189
Beschrijving
Disease status before this cellular therapy
Datatype
integer
Alias
- UMLS CUI [1]
- C0012634
Beschrijving
Type of cells
Datatype
text
Beschrijving
Type of cells
Datatype
text
Beschrijving
Number of cells infused by type
Beschrijving
Nucleated cells
Datatype
integer
Maateenheden
- 10^8/kg
Alias
- UMLS CUI [1]
- C1180059
Beschrijving
CD 34+
Datatype
text
Alias
- UMLS CUI [1]
- C3538723
Beschrijving
CD 34+
Datatype
text
Alias
- UMLS CUI [1]
- C3538723
Beschrijving
CD 3+
Datatype
float
Alias
- UMLS CUI [1]
- C3542405
Beschrijving
CD 3+
Datatype
text
Alias
- UMLS CUI [1]
- C3542405
Beschrijving
All cells
Datatype
integer
Maateenheden
- x10^6/kg
Alias
- UMLS CUI [1]
- C0007584
Beschrijving
Chronological number
Datatype
float
Alias
- UMLS CUI [1]
- C2348184
Beschrijving
Indication
Datatype
text
Alias
- UMLS CUI [1,1]
- C3146298
- UMLS CUI [1,2]
- C0302189
Beschrijving
Number of Infusions
Datatype
float
Alias
- UMLS CUI [1,1]
- C2348184
- UMLS CUI [1,2]
- C1289919
Beschrijving
Maximum grade
Datatype
integer
Beschrijving
Disease treatment
Datatype
integer
Alias
- UMLS CUI [1]
- C0087111
Beschrijving
FIRST EVIDENCE OF DISEASE WORSENING SINCE LAST HSCT
Beschrijving
LAST DISEASE AND PATIENT STATUS
Beschrijving
Recent onset (last 10 days). Exclude metabolic, infectious or drug cause, or seizure due to past irreversible CNS damage.
Datatype
text
Beschrijving
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.
Datatype
text
Beschrijving
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.
Datatype
text
Beschrijving
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.
Datatype
text
Beschrijving
New onset of sensory or motor neuropathy involving cranial nerves. Include vertigo due to lupus.
Datatype
text
Beschrijving
Severe, persistent headache: may be migrainous, but must be nonresponsive to narcotic analgesia.
Datatype
text
Beschrijving
New onset of cerebrovascular accident(s). Exclude arteriosclerosis or hypertensive causes.
Datatype
text
Beschrijving
Ulceration, gangrene, tender finger nodules, periungual infarction, splinter hemorrhages or biopsy or angiogram proof of vasculitis.
Datatype
text
Beschrijving
More than 2 joints with pain and signs of inflammation (i.e., tenderness, swelling or effusion).
Datatype
text
Beschrijving
Proximal muscle aching/weakness, associated with elevated creatine phosphokinase/aldolase or electromyogram changes or a biopsy showing myositis.
Datatype
text
Beschrijving
Heme-granular or red blood cell casts.
Datatype
text
Beschrijving
>5 red blood cells/high power field. Exclude stone, infection or other cause.
Datatype
text
Beschrijving
>0.5 gm/24 hours. New onset or recent increase of >0.5 gm/24 hours.
Datatype
text
Beschrijving
>5 white blood cells/high power field. Exclude infection.
Datatype
text
Beschrijving
Ongoing inflammatory lupus rash.
Datatype
text
Beschrijving
Ongoing abnormal, patchy or diffuse loss of hair due to active lupus.
Datatype
text
Beschrijving
Ongoing oral or nasal ulcerations due to active lupus
Datatype
text
Beschrijving
Classic and severe pleuritic chest pain or pleural rub or effusion or new pleural thickening due to lupus.
Datatype
text
Beschrijving
Classic and severe pericardial pain or rub or effusion or electrocardiogram confirmation.
Datatype
text
Beschrijving
Decrease in CH50, C3 or C4 below the lower limit of normal for testing laboratory.
Datatype
text
Beschrijving
>25% binding by Farr assay or above normal range for testing laboratory.
Datatype
text
Beschrijving
>38°C. Exclude infectious cause.
Datatype
text
Beschrijving
<100,000 platelets/mm 3 (x 10 9 /L).
Datatype
text
Beschrijving
<3,000 white blood cells/mm 3 (x 10 9 /L). Exclude drug causes.
Datatype
text
Beschrijving
LABORATORY VALUES
Beschrijving
Haemoglobin Blood
Datatype
float
Alias
- UMLS CUI [1]
- C0518015
Beschrijving
Haemoglobin
Datatype
text
Beschrijving
Platelets
Datatype
float
Maateenheden
- 1000/uL
Alias
- UMLS CUI [1]
- C0005821
Beschrijving
Platelets
Datatype
text
Beschrijving
WBC
Datatype
float
Beschrijving
WBC
Datatype
text
Beschrijving
ESR
Datatype
float
Alias
- UMLS CUI [1]
- C1176468
Beschrijving
Erythrocyte sedimentation rate
Datatype
text
Beschrijving
Creatinine, Serum
Datatype
float
Maateenheden
- mg/dL
Alias
- UMLS CUI [1]
- C0201976
Beschrijving
Serum creatinine
Datatype
text
Beschrijving
Creatinine Clearance
Datatype
float
Maateenheden
- mL/min
Alias
- UMLS CUI [1]
- C0373595
Beschrijving
Creatinine clearance
Datatype
text
Beschrijving
Total urinary protein excretion (mg/24 h)
Datatype
float
Alias
- UMLS CUI [1]
- C3897352
Beschrijving
Total urinary protein excretion
Datatype
text
Beschrijving
CH50 Complement reduced
Datatype
integer
Beschrijving
Complement component reduced
Datatype
integer
Beschrijving
Complement component reduced
Datatype
text
Beschrijving
Antibodies studied
Datatype
integer
Beschrijving
anti-dsDNA
Datatype
text
Beschrijving
anti-cardiolipin IgG
Datatype
text
Beschrijving
anti-cardiolipin IgM
Datatype
text
Beschrijving
antinuclear antibody (ANA) test
Datatype
text
Beschrijving
anti-Sm
Datatype
text
Beschrijving
anti-SSA (anti-Ro)
Datatype
text
Beschrijving
anti-SSB (anti-La)
Datatype
text
Beschrijving
lupus-anticoagulant
Datatype
text
Beschrijving
PATIENT’S SELF ASSESSMENT AT THIS FOLLOW UP
Beschrijving
SF-36 Health Survey completed
Datatype
text
Beschrijving
SF-36 score reported as
Datatype
text
Beschrijving
Physical Functioning
Datatype
float
Beschrijving
Physical Functioning
Datatype
text
Beschrijving
Role Functioning-Physical
Datatype
float
Beschrijving
Role Functioning-Physical
Datatype
integer
Beschrijving
Role Functioning-Emotional
Datatype
float
Beschrijving
Role Functioning-Emotional
Datatype
integer
Beschrijving
Social Functioning
Datatype
float
Beschrijving
Social Functioning
Datatype
integer
Beschrijving
Bodily Pain
Datatype
float
Beschrijving
Bodily Pain
Datatype
integer
Beschrijving
Mental Health
Datatype
float
Beschrijving
Mental Health
Datatype
integer
Beschrijving
Vitality
Datatype
float
Beschrijving
Vitality
Datatype
integer
Beschrijving
General Health
Datatype
float
Beschrijving
General Health
Datatype
integer
Beschrijving
Did the patient complete a Health Assessment Questionnaire (HAQ)?
Datatype
integer
Beschrijving
Patient’s score
Datatype
float
Beschrijving
Worst possible score
Datatype
float
Beschrijving
Best possible score
Datatype
float
Beschrijving
Has patient or partner become pregnant after this HSCT?
Datatype
text
Beschrijving
Survival Status
Datatype
integer
Alias
- UMLS CUI [1]
- C1148433
Beschrijving
Type of score used
Datatype
integer
Beschrijving
Performance score
Datatype
integer
Alias
- UMLS CUI [1]
- C1518965
Beschrijving
Cause of death
Datatype
integer
Alias
- UMLS CUI [1]
- C0007465
Beschrijving
GvHD
Datatype
text
Alias
- UMLS CUI [1,1]
- C0007465
- UMLS CUI [1,2]
- C0018133
Beschrijving
Interstitial Pneumonitis
Datatype
text
Alias
- UMLS CUI [1,1]
- C0007465
- UMLS CUI [1,2]
- C0206061
Beschrijving
Pulmonary toxicity
Datatype
text
Alias
- UMLS CUI [1,1]
- C0007465
- UMLS CUI [1,2]
- C0919924
Beschrijving
Infection
Datatype
integer
Beschrijving
Infection HSCT
Datatype
integer
Beschrijving
Rejection / poor graft function
Datatype
integer
Alias
- UMLS CUI [1]
- C0018129
Beschrijving
Veno-Occlusive disease (VOD)
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0007465
- UMLS CUI [1,2]
- C0948441
Beschrijving
Haemorrhage
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0007465
- UMLS CUI [1,2]
- C0019080
Beschrijving
Cardiac toxicity
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0007465
- UMLS CUI [1,2]
- C0876994
Beschrijving
Central nervous system toxicity
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0007465
- UMLS CUI [1,2]
- C3160947
Beschrijving
Gastro intestinal toxicity
Datatype
integer
Alias
- UMLS CUI [1,1]
- C0007465
- UMLS CUI [1,2]
- C1142499
Beschrijving
Skin toxicity
Datatype
integer
Alias
- UMLS CUI [1]
- C1167791
Beschrijving
Renal failure
Datatype
integer
Alias
- UMLS CUI [1]
- C1533077
Beschrijving
Multiple organ failure
Datatype
integer
Beschrijving
Other related cause
Datatype
boolean
Beschrijving
ADDITIONAL NOTES IF APPLICABLE
Similar models
19ppEBMT SLE 16SLE
- StudyEvent: ODM
C0337611 (UMLS CUI [1,2])
C0085205 (UMLS CUI [1,3])
C0237753 (UMLS CUI [1,4])
C0337611 (UMLS CUI [1,2])
C0030664 (UMLS CUI [1,3])
C0337611 (UMLS CUI [1,2])
C0030664 (UMLS CUI [1,3])
C0332835 (UMLS CUI [1,2])
C2745955 (UMLS CUI [1,3])
C0011008 (UMLS CUI [1,4])
C0011008 (UMLS CUI [1,2])
C0441800 (UMLS CUI [1,2])
C0011008 (UMLS CUI [1,2])
C1306673 (UMLS CUI [1,2])
C1306673 (UMLS CUI [1,3])
C1306673 (UMLS CUI [1,2])
C0023884 (UMLS CUI [1,3])
C1306673 (UMLS CUI [1,2])
C0021853 (UMLS CUI [1,3])
C1514893 (UMLS CUI [1,2])
C0011008 (UMLS CUI [1,3])
C0011008 (UMLS CUI [1,2])
C0009566 (UMLS CUI [1,2])
C0011008 (UMLS CUI [1,2])
C0302189 (UMLS CUI [1,2])
C1289919 (UMLS CUI [1,2])
C0206061 (UMLS CUI [1,2])
C0948441 (UMLS CUI [1,2])
C3160947 (UMLS CUI [1,2])
C1142499 (UMLS CUI [1,2])