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])
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])
Code List
Patient following national / international study / trial
Name of study / trial
Item
Name of study / trial
text
C0008976 (UMLS CUI [1])
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])
ABO Group
Item
ABO Group
text
Item
Rh factor
integer
C0035403 (UMLS CUI [1])
CL Item
Not evaluated (3)
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])
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
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)
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])
Item
Has the information requested in this section been submitted with a previous transplant registration?
text
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
Malar rash [250]
text
Code List
Malar rash [250]
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Item
Discoid rash [251]
text
Code List
Discoid rash [251]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Photosensitivity [253]
text
Code List
Photosensitivity [253]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Oral ulcers [252]
text
Code List
Oral ulcers [252]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Arthritis [226]
text
Code List
Arthritis [226]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Serositis [225]
text
Code List
Serositis [225]
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
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
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Neurologic disorder [221]
text
Code List
Neurologic disorder [221]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Hematologic disorder [230]
text
Code List
Hematologic disorder [230]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Immunologic disorder [254]
text
Code List
Immunologic disorder [254]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Antinuclear antibody
text
Code List
Antinuclear antibody
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
THERAPIES
Item
THERAPIES
boolean
Datestarted
Item
Date started
date
Item
(including antibodies, GF, hormones, etc.)
text
Code List
(including antibodies, GF, hormones, etc.)
CL Item
Unknown (Unknown)
Item
(including antibodies, GF, hormones, etc.)
text
Code List
(including antibodies, GF, hormones, etc.)
CL Item
Unknown (Unknown)
Item
Azathioprine
integer
C0004482 (UMLS CUI [1])
Item
Corticosteroids
text
Code List
Corticosteroids
CL Item
Unknown (Unknown)
Item
Cyclophosphamide
text
Code List
Cyclophosphamide
CL Item
Unknown (Unknown)
CL Item
Unknown (Unknown)
Item
Mycophenolate mofetil
text
Code List
Mycophenolate mofetil
CL Item
Unknown (Unknown)
Item
Intravenous immune globulin (IVIG)
text
Code List
Intravenous immune globulin (IVIG)
CL Item
Unknown (Unknown)
Item
Other drugs (additional text)
text
Code List
Other drugs (additional text)
CL Item
Unknown (Unknown)
Item
Lymphocytopheresis
integer
C0024226 (UMLS CUI [1])
Code List
Lymphocytopheresis
Item
Plasmapheresis
integer
C0032134 (UMLS CUI [1])
Other drugs
Item
Other drugs, please specify
boolean
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])
Code List
TRANSPLANT TYPE
Date of 1st collection or pheresis
Item
Autologous
date
Item
Was lupus nephritis present at anytime prior to mobilisation?
integer
Code List
Was lupus nephritis present at anytime prior to mobilisation?
Item
Renal biopsy done?
integer
Code List
Renal biopsy done?
date of most recent renal biopsy
Item
if renal biopsy done, date of most recent renal biopsy
date
Item
Grade Histology
text
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)
Grade Histology
Item
if other, please specify
text
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Seizures [255]
Item
if yes, Score 8
boolean
Item
Psychosis [256]
integer
Code List
Psychosis [256]
CL Item
Not evaluated (3)
Psychosis [256]
Item
if yes, Scoe 8
boolean
Item
Organic brain syndrome [257]
integer
Code List
Organic brain syndrome [257]
CL Item
Not evaluated (3)
Organic brain syndrome [257]
Item
if yes, Score 8
boolean
Item
Visual disturbance [109]
integer
Code List
Visual disturbance [109]
CL Item
Not evaluated (3)
Visual disturbance [109]
Item
if yes, Score 8
boolean
Item
Cranial nerve disorder [258]
text
Code List
Cranial nerve disorder [258]
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
Code List
Lupus headache [259]
CL Item
Not evaluated (3)
Lupus headache [259]
Item
if yes, Score 8
boolean
CL Item
Not evaluated (3)
CVA [260]
Item
if yes, Score 8
boolean
Item
Vasculitis [234]
integer
Code List
Vasculitis [234]
CL Item
Not evaluated (3)
Vasculitis [234]
Item
if yes, Score 8
boolean
Item
Arthritis [226]
integer
Code List
Arthritis [226]
CL Item
Not evaluated (3)
Arthritis [226]
Item
if yes, Sore 4
boolean
Item
Myositis [261]
integer
CL Item
Not evaluated (3)
Myositis [261]
Item
if yes, Score 4
boolean
Item
Urinary casts [262]
integer
Code List
Urinary casts [262]
CL Item
Not evaluated (3)
Urinary casts [262]
Item
if yes, Score 4
boolean
Item
Hematuria [263]
integer
Code List
Hematuria [263]
CL Item
Not evaluated (3)
Hematuria [263]
Item
if yes, Score 4
boolean
Item
Proteinuria [264]
integer
Code List
Proteinuria [264]
CL Item
Not evaluated (3)
Proteinuria [264]
Item
if yes, Score 4
boolean
Item
Pyuria [265]
integer
CL Item
Not evaluated (3)
Pyuria [265]
Item
if yes, score 4
boolean
Item
New rash [249]
integer
CL Item
Not evaluated (3)
New rash [249]
Item
if yes, Score 2
boolean
Item
Alopecia [266]
integer
CL Item
Not evaluated (3)
Alopecia [266]
Item
if yes, Score 2
boolean
Item
Mucosal ulcers [252]
integer
Code List
Mucosal ulcers [252]
CL Item
Not evaluated (3)
Mucosal ulcers [252]
Item
if yes, Score 2
boolean
Item
Pleurisy [267]
integer
CL Item
Not evaluated (3)
Pleurisy [267]
Item
if yes, Score 2
boolean
Item
Pericarditis [268]
integer
Code List
Pericarditis [268]
CL Item
Not evaluated (3)
Pericarditis [268]
Item
if yes, Score 2
boolean
Item
Low complement [269]
integer
Code List
Low complement [269]
CL Item
Not evaluated (3)
Low complement [269]
Item
if yes, Score 2
boolean
Item
Increased DNA binding [270]
integer
Code List
Increased DNA binding [270]
CL Item
Not evaluated (3)
Increased DNA binding [270]
Item
if yes, Score 2
boolean
Item
>38°C. Exclude infectious cause
integer
Code List
>38°C. Exclude infectious cause
CL Item
Not evaluated (3)
Fever [271]
Item
if yes, Score 1
boolean
Item
Thrombocytopenia [272]
integer
Code List
Thrombocytopenia [272]
CL Item
Not evaluated (3)
Thrombocytopenia [272]
Item
if yes, Score 1
boolean
Item
Leukopenia [272]
integer
Code List
Leukopenia [272]
CL Item
Not evaluated (3)
Leukopenia [272]
Item
if yes, Score 1
boolean
Haemoglobin
Item
Haemoglobin
float
C0019046 (UMLS CUI [1])
Item
Hemoglobin
integer
C0518015 (UMLS CUI [1])
CL Item
Not evaluated (1)
ESR
Item
Erythrocyte Sedimentation Rate
integer
C1176468 (UMLS CUI [1])
Item
Erythrocyte sedimentation rate
integer
Code List
Erythrocyte sedimentation rate
CL Item
Not evaluated (1)
platelets
Item
Platelets
integer
C0005821 (UMLS CUI [1])
CL Item
Not evaluated (1)
WBC
Item
WBC
float
C0023508 (UMLS CUI [1])
CL Item
Not evaluated (1)
Serumcreatinine
Item
Serum creatinine
float
Item
Serum creatinine
integer
Code List
Serum creatinine
CL Item
Not evaluated (1)
Creatinine Clearance
Item
Creatinine Clearance
float
C0373595 (UMLS CUI [1])
Item
Creatinine clearance
integer
Code List
Creatinine clearance
CL Item
Not evaluated (1)
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
Code List
Total urinary protein excretion
CL Item
Not evaluated (1)
Item
CH50 Complement reduced
integer
Code List
CH50 Complement reduced
CL Item
Not evaluated (3)
Item
Complement component C3 reduced
integer
Code List
Complement component C3 reduced
CL Item
Not evaluated (3)
Item
Complement component C4 reduced
text
Code List
Complement component C4 reduced
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Item
Antibodies studied
text
Code List
Antibodies studied
CL Item
Unknown (Unknown)
Item
Antibodies studied, if yes
integer
Code List
Antibodies studied, if yes
CL Item
Not evaluated (3)
Item
anti-cardiolipin IgG
integer
Code List
anti-cardiolipin IgG
CL Item
Not evaluated (3)
Item
anti-cardiolipin IgM
integer
Code List
anti-cardiolipin IgM
CL Item
Not evaluated (3)
Item
antinuclear antibody (ANA) test
integer
Code List
antinuclear antibody (ANA) test
CL Item
Not evaluated (3)
CL Item
Elevated (Elevated )
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Item
anti-SSA (anti-Ro)
integer
Code List
anti-SSA (anti-Ro)
CL Item
Elevated (Elevated )
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Item
anti-SSB (anti-La)
integer
Code List
anti-SSB (anti-La)
CL Item
Elevated (Elevated )
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Item
lupus-anticoagulant
integer
Code List
lupus-anticoagulant
CL Item
Elevated (Elevated )
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Item
SF-36 Health Survey completed
integer
Code List
SF-36 Health Survey completed
Item
if yes, score reported as
text
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
Code List
Physical Functioning
CL Item
Not evaluated (1)
Role Functioning-Physical
Item
Role Functioning-Physical
float
Item
Role Functioning-Physical
integer
Code List
Role Functioning-Physical
CL Item
Not evaluated (1)
Role Functioning-Emotional
Item
Role Functioning-Emotional
float
Item
Role Functioning-Emotional
integer
Code List
Role Functioning-Emotional
CL Item
Not evaluated (1)
Social Functioning
Item
Social Functioning
float
Item
Social Functioning
integer
Code List
Social Functioning
CL Item
Not evaluated (1)
Bodily Pain
Item
Bodily Pain
float
CL Item
Not evaluated (1)
Mental Health
Item
Mental Health
float
Item
Mental Health
integer
CL Item
Not evaluated (1)
Vitality:
Item
Vitality:
float
CL Item
Not evaluated (1)
General Health
Item
General Health
float
Item
General Health
integer
CL Item
Not evaluated (1)
Item
Did the patient complete a Health Assessment Questionnaire (HAQ)?
integer
Code List
Did the patient complete a Health Assessment Questionnaire (HAQ)?
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
Was lupus nephritis present at anytime prior to HSCT?
text
Code List
Was lupus nephritis present at anytime prior to HSCT?
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
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)
Item
Renal biopsy done?
text
Code List
Renal biopsy done?
CL Item
Unknown (Unknown)
ADDITIONAL DISEASE TREATMENT
Item
ADDITIONAL DISEASE TREATMENT
boolean
Item
ADDITIONAL DISEASE TREATMENT if yes
integer
C1706712 (UMLS CUI [1])
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)
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])
Code List
Patient following national / international study / trial
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])
Date last contact
Item
Date of Last Contact or Death
date
C0805839 (UMLS CUI [1])
Item
Maximum grade
integer
CL Item
grade 0 (Absent) (1)
CL Item
Not evaluated (6)
Item
If present GvHD, Maximum grade
integer
C0856825 (UMLS CUI [1,1])
C0441800 (UMLS CUI [1,2])
Code List
If present GvHD, Maximum grade
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])
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])
CL Item
Not evaluated (6)
Item
Stage liver
integer
C0856825 (UMLS CUI [1,1])
C1306673 (UMLS CUI [1,2])
C0023884 (UMLS CUI [1,3])
CL Item
Not evaluated (6)
Item
Stage gut
integer
C0856825 (UMLS CUI [1,1])
C1306673 (UMLS CUI [1,2])
C0021853 (UMLS CUI [1,3])
CL Item
Not evaluated (6)
Item
Resolution
integer
C0856825 (UMLS CUI [1,1])
C1514893 (UMLS CUI [1,2])
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])
Code List
Presence of cGvHD
CL Item
Present continuously since last reported episode (Present continuously since last reported episode)
CL Item
Resolved (Resolved)
Date of onset
Item
Date of onset
date
C0574845 (UMLS CUI [1])
Item
Presence of cGVHD if yes
integer
C0867389 (UMLS CUI [1])
Code List
Presence of cGVHD if yes
CL Item
First episode (1)
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])
Item
Organs affected
integer
C0449642 (UMLS CUI [1])
Code List
Organs affected
CL Item
Other, specify (7)
Date of Resolution
Item
If resolved, specify the date of resolution:
date
C1514893 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
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])
Code List
Idiopathic pneumonia syndrome
CL Item
Unknown (Unknown)
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])
Code List
(Check all that are applicable for this period)
CL Item
Unknown (Unknown)
Item
(Check all that are applicable for this period)
integer
C0086543 (UMLS CUI [1])
Code List
(Check all that are applicable for this period)
CL Item
Unknown (Unknown)
Cataract
Item
Cataract
date
Item
Check all that are applicable for this period Haemorrhagic cystitis, non infectious
text
C0085692 (UMLS CUI [1])
Code List
Check all that are applicable for this period Haemorrhagic cystitis, non infectious
CL Item
Unknown (Unknown)
Haemolytic anaemia due to blood group
Item
Haemolytic anaemia due to blood group
date
Item
Specify: ARDS, non infectious
text
C0035222 (UMLS CUI [1])
Code List
Specify: ARDS, non infectious
CL Item
Unknown (Unknown)
ARDS, non infectious
Item
ARDS, non infectious
date
Item
Check all that are applicable for this period)
integer
Code List
Check all that are applicable for this period)
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])
Code List
(Check all that are applicable for this period HSCT-associated microangiopathy
CL Item
Unknown (Unknown)
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])
Code List
(Check all that are applicable for this period) Renal failure requiring dialysis
CL Item
Unknown (Unknown)
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])
Code List
(Check all that are applicable for this period) Haemolytic anaemia due to blood group
CL Item
Unknown (Unknown)
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])
Code List
Check all that are applicable for this period) Aseptic bone necrosis
CL Item
Unknown (Unknown)
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
Graft loss
text
C0877042 (UMLS CUI [1])
CL Item
Not evaluated (Not evaluated)
Item
Overall chimaerism
integer
Code List
Overall chimaerism
CL Item
Full (donor >95 %) (1)
CL Item
Mixed (partial) (2)
CL Item
Autologous reconstitution (recipient >95 %) (3)
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
Code List
Number in the infusion order
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])
CL Item
ABO group (ABO group)
CL Item
Cytogenetic (Cytogenetic)
CL Item
Molecular (Molecular)
CL Item
unknown (unknown)
Item
SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
integer
Code List
SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
CL Item
Previously reported (1)
CL Item
No at date of this follow-up (3)
SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
Item
if yes, date of diagnosis
date
CL Item
Lymphoproliferative disorder (Lymphoproliferative disorder)
Item
Treatment given since last report
text
C1706712 (UMLS CUI [1])
Code List
Treatment given since last report
CL Item
Unknown (Unknown)
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])
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
Yes (Mark disease status before this cellular therapy) (2)
Item
Disease status before this cellular therapy
integer
C0012634 (UMLS CUI [1])
Code List
Disease status before this cellular therapy
CL Item
Not evaluated (Not evaluated)
CL Item
Not in CR (Not in CR)
CL Item
Donor lymphocyte infusion (DLI) (Donor lymphocyte infusion (DLI))
CL Item
Mesenchymal cells (Mesenchymal cells)
CL Item
Unknown (Unknown)
Type of cells
Item
If other
text
Item
Number of Nucleated cells infused (DLI only)
integer
C1180059 (UMLS CUI [1])
Code List
Number of Nucleated cells infused (DLI only)
CL Item
Not evaluated (2)
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])
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])
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])
Code List
Total number of cells infused (non DLI only)
CL Item
Not evaluated (2)
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])
Code List
Indication (check all that apply)
CL Item
Loss/decreased chimaerism (Loss/decreased chimaerism)
CL Item
Mixed chimaerism (Mixed chimaerism)
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
CL Item
grade 0 (absent) (1)
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])
Code List
Disease treatment (apart from donor cell infusion or other type of cell therapy)
CL Item
Yes: Planned (planned before HSCT took place) (2)
CL Item
Yes: Not planned (for relapse/progression or persistent disease) (3)
Item
EVIDENCE OF DISEASE ACTIVITY
text
Code List
EVIDENCE OF DISEASE ACTIVITY
CL Item
Continuous worsening since HSCT (Continuous worsening since HSCT)
CL Item
Previously reported (Previously reported)
CL Item
Unknown (Unknown)
EVIDENCE OF DISEASE ACTIVITY
Item
Date First Noted (mm-dd-yyyy)
date
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Psychosis [256]
text
Code List
Psychosis [256]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Organic brain syndrome [257]
text
Code List
Organic brain syndrome [257]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Visual disturbance [109]
text
Code List
Visual disturbance [109]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Cranial nerve disorder [258]
text
Code List
Cranial nerve disorder [258]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Lupus headache [259]
text
Code List
Lupus headache [259]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Vasculitis [234]
text
Code List
Vasculitis [234]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Arthritis [226]
text
Code List
Arthritis [226]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Urinary casts [262]
text
Code List
Urinary casts [262]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Hematuria [263]
text
Code List
Hematuria [263]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Proteinuria [264]
text
Code List
Proteinuria [264]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Mucosal ulcers [252]
text
Code List
Mucosal ulcers [252]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Pericarditis [268]
text
Code List
Pericarditis [268]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Low complement [269]
text
Code List
Low complement [269]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Increased DNA binding [270]
text
Code List
Increased DNA binding [270]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Thrombocytopenia [272]
text
Code List
Thrombocytopenia [272]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Leukopenia [272]
text
Code List
Leukopenia [272]
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Haemoglobin Blood
Item
Haemoglobin
float
C0518015 (UMLS CUI [1])
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Platelets
Item
Platelet count
float
C0005821 (UMLS CUI [1])
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
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
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
Code List
Serum creatinine
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Creatinine Clearance
Item
Creatinine Clearance
float
C0373595 (UMLS CUI [1])
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
Code List
Total urinary protein excretion
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
CH50 Complement reduced
integer
Code List
CH50 Complement reduced
CL Item
Not evaluated (3)
Item
Complement component C3 reduced
integer
Code List
Complement component C3 reduced
CL Item
Not evaluated (3)
Item
Complement component C4 reduced
text
Code List
Complement component C4 reduced
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Antibodies studied
integer
Code List
Antibodies studied
Item
Antibodies studied, if yes
text
Code List
Antibodies studied, if yes
CL Item
Elevated (Elevated )
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Item
Antibodies studied, if yes
text
Code List
Antibodies studied, if yes
CL Item
Elevated (Elevated )
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Item
Antibodies studied, if yes
text
Code List
Antibodies studied, if yes
CL Item
Elevated (Elevated )
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Item
Antibodies studied, if yes
text
Code List
Antibodies studied, if yes
CL Item
Elevated (Elevated )
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Item
anti-Sm Antibodies studied, if yes
text
Code List
anti-Sm Antibodies studied, if yes
CL Item
Elevated (Elevated )
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Item
anti-SSA (anti-Ro) Antibodies studied, if yes
text
Code List
anti-SSA (anti-Ro) Antibodies studied, if yes
CL Item
Elevated (Elevated )
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Item
anti-SSB (anti-La) Antibodies studied, if yes
text
Code List
anti-SSB (anti-La) Antibodies studied, if yes
CL Item
Elevated (Elevated )
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Item
lupus-anticoagulant Antibodies studied, if yes
text
Code List
lupus-anticoagulant Antibodies studied, if yes
CL Item
Elevated (Elevated )
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Item
SF-36 Health Survey completed
text
Code List
SF-36 Health Survey completed
CL Item
Unknown (Unknown)
Item
SF-36 score reported as
text
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
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
Code List
Role Functioning-Physical
CL Item
Not evaluated (1)
Role Functioning-Emotional
Item
Role Functioning-Emotional
float
Item
Role Functioning-Emotional
integer
Code List
Role Functioning-Emotional
CL Item
Not evaluated (1)
Social Functioning
Item
Social Functioning
float
Item
Social Functioning
integer
Code List
Social Functioning
CL Item
Not evaluated (1)
Bodily Pain
Item
Bodily Pain
float
CL Item
Not evaluated (1)
Mental Health
Item
Mental Health
float
Item
Mental Health
integer
CL Item
Not evaluated (1)
Vitality
Item
Vitality
float
CL Item
Not evaluated (1)
General Health
Item
General Health
float
Item
General Health
integer
CL Item
Not evaluated (1)
Item
Did the patient complete a Health Assessment Questionnaire (HAQ)?
integer
Code List
Did the patient complete a Health Assessment Questionnaire (HAQ)?
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
Code List
Has patient or partner become pregnant after this HSCT?
CL Item
Unknown (Unknown)
Item
Survival Status
integer
C1148433 (UMLS CUI [1])
Code List
Survival Status
Item
Type of score used PERFORMANCE SCORE (if alive)
integer
Code List
Type of score used PERFORMANCE SCORE (if alive)
Item
Score
integer
C1518965 (UMLS CUI [1])
CL Item
100 (Normal, NED) (1)
CL Item
10 (Moribund) (10)
CL Item
Not evaluated (11)
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])
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)
Item
GvHD
text
C0007465 (UMLS CUI [1,1])
C0018133 (UMLS CUI [1,2])
CL Item
Unknown (Unknown)
Item
Interstitial Pneumonitis
text
C0007465 (UMLS CUI [1,1])
C0206061 (UMLS CUI [1,2])
Code List
Interstitial Pneumonitis
CL Item
Unknown (Unknown)
Item
Pulmonary toxicity
text
C0007465 (UMLS CUI [1,1])
C0919924 (UMLS CUI [1,2])
Code List
Pulmonary toxicity
CL Item
Unknown (Unknown)
Item
Rejection / poor graft function
integer
C0018129 (UMLS CUI [1])
Code List
Rejection / poor graft function
Item
Veno-Occlusive disease (VOD)
integer
C0007465 (UMLS CUI [1,1])
C0948441 (UMLS CUI [1,2])
Code List
Veno-Occlusive disease (VOD)
Item
Haemorrhage
integer
C0007465 (UMLS CUI [1,1])
C0019080 (UMLS CUI [1,2])
Item
Cardiac toxicity
integer
C0007465 (UMLS CUI [1,1])
C0876994 (UMLS CUI [1,2])
Code List
Cardiac toxicity
Item
Central nervous system toxicity
integer
C0007465 (UMLS CUI [1,1])
C3160947 (UMLS CUI [1,2])
Code List
Central nervous system toxicity
Item
Gastro intestinal toxicity
integer
C0007465 (UMLS CUI [1,1])
C1142499 (UMLS CUI [1,2])
Code List
Gastro intestinal toxicity
Item
Skin toxicity
integer
C1167791 (UMLS CUI [1])
Item
Renal failure
integer
C1533077 (UMLS CUI [1])
Item
Multiple organ failure
integer
Code List
Multiple organ failure
Other related cause
Item
Other related cause
boolean
Comments
Item
Comments
text
IDENTIFICATION & SIGNATURE
Item
IDENTIFICATION & SIGNATURE
text