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
integer
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])
ContactPersonE-mailText
Item
E-mail
text
C0027361 (UMLS CUI [1,1])
C0337611 (UMLS CUI [1,2])
C0013849 (UMLS CUI [1,3])
C1527021 (UMLS CUI [1,4])
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
integer
C0000778 (UMLS CUI [1])
Item
Rh factor
integer
C0035403 (UMLS CUI [1])
CL Item
Not evaluated (3)
Diagnose-Datum
Item
Date of diagnosis
date
C2316983 (UMLS CUI [1,1])
C1274082 (UMLS CUI [1,2])
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)
Item
TYPE OF TREATMENT BEING REGISTERED WITH THIS FORM If patients have undergone immunosuppression prior to HSCT tick both boxes
text
Code List
TYPE OF TREATMENT BEING REGISTERED WITH THIS FORM If patients have undergone immunosuppression prior to HSCT tick both boxes
CL Item
Includes HSCT registration (Includes HSCT registration)
CL Item
Immunosuppressive therapy (IS) (Immunosuppressive therapy (IS))
Acquired
Item
Acquired
boolean
Item
Aplastic anaemia
text
Code List
Aplastic anaemia
CL Item
Moderate (Moderate)
CL Item
Very severe (Very severe)
Pure red cell aplasia (non constitutional PRCA)
Item
Pure red cell aplasia (non constitutional PRCA)
boolean
Paroxysmal nocturnal haemoglobinuria (PNH)
Item
Paroxysmal nocturnal haemoglobinuria (PNH)
boolean
Haemolytic
Item
Haemolytic
boolean
Aplastic
Item
Aplastic
boolean
Thrombotic
Item
Thrombotic
boolean
Other
Item
if other presentation, please specify
text
Pure white cell aplasia
Item
Pure white cell aplasia
boolean
Amegakaryocytic thrombocytopenia (non constitutional)
Item
Amegakaryocytic thrombocytopenia (non constitutional)
boolean
Other
Item
if other, please specify
text
Genetic
Item
Genetic
boolean
Fanconi
Item
Fanconi
boolean
FANC complementation group
Item
FANC complementation group
text
Diamond-Blackfan (congenital / constitutional PRCA)
Item
Diamond-Blackfan (congenital / constitutional PRCA)
boolean
Shwachman-Diamond Syndrome
Item
Shwachman-Diamond Syndrome
boolean
Dyserythropoietic Anaemia
Item
Dyserythropoietic Anaemia
boolean
Dyskeratosis congenita
Item
Dyskeratosis congenita
boolean
Amegakaryocytic thrombocytopaenia (constitutional)
Item
Amegakaryocytic thrombocytopaenia (constitutional)
boolean
Other
Item
if Other, please specify
text
CL Item
Idiopathic (Idiopathic)
CL Item
Post-hepatitis (Post-hepatitis)
CL Item
Toxic (includes drug induced) (Toxic (includes drug induced))
Item
Chromosome analysis
text
C0200867 (UMLS CUI [1])
Code List
Chromosome analysis
CL Item
Done: abnormal (Done: abnormal)
CL Item
Done: normal (Done: normal)
CL Item
Not Done or failed (Not Done or failed)
CL Item
Unknown (Unknown)
Item
If done: Technique used
text
Code List
If done: Technique used
CL Item
Conventional (Conventional )
Number of metaphases with anomalies
Item
Number of metaphases with anomalies
text
number of metaphases examined
Item
number of metaphases examined
text
Item
trisomy 8
integer
C0432412 (UMLS CUI [1])
Item
If abnormal, indicate abnormalities found
text
Code List
If abnormal, indicate abnormalities found
CL Item
Present (Present)
Other or associated abnormalities (specify)
Item
Other or associated abnormalities (specify)
text
Item
Chromosomal breakage test (for Fanconi)
text
Code List
Chromosomal breakage test (for Fanconi)
CL Item
Negative (Negative )
CL Item
Positive (Positive )
CL Item
Not evaluated (Not evaluated)
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Item
Resistance to random platelets
text
Code List
Resistance to random platelets
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Item
Systemic infection
text
Code List
Systemic infection
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Date of PNH test
Item
Date of PNH test
date
Item
PNH diagnostics by flow cytometry
text
Code List
PNH diagnostics by flow cytometry
CL Item
Clone absent (Clone absent)
CL Item
Clone present (Clone present)
CL Item
Not evaluated (Not evaluated)
Size of the PNH
Item
Size of the PNH clone in %
text
Item
Flow cytometry assessment done on
text
Code List
Flow cytometry assessment done on
CL Item
Granulocytes (Granulocytes)
CL Item
Not done (Not done)
Flow cytometry assessment done on
Item
If other, please specify
text
PNH diagnostics by other test
Item
PNH diagnostics by other test, specify (if type of test unknown, write “unknown” here)
text
Item
PNH diagnostics by other test
text
Code List
PNH diagnostics by other test
CL Item
Clone absent (Clone absent)
CL Item
Clone present (Clone present)
CL Item
Not done (Not done)
Clinical manifestations of PNH
Item
Clinical manifestations of PNH
boolean
Item
WAS THE PATIENT TREATED BEFORE THE HSCT PROCEDURE?
integer
Code List
WAS THE PATIENT TREATED BEFORE THE HSCT PROCEDURE?
CL Item
Yes, Date started (2)
FIRST TREATMENT EPISODE FOR THIS REGISTRATION
Item
Date treatment started
date
SEQUENTIAL NUMBER OF THIS TREATMENT EPISODE
Item
SEQUENTIAL NUMBER OF THIS TREATMENT EPISODE (Other treatment episodes can have been registered for this patient with previous data submissions)
text
Haemoglobin
Item
Haemoglobin
float
C0019046 (UMLS CUI [1])
CL Item
Not evaluated (Not evaluated )
CL Item
Untransfused (Untransfused )
CL Item
Transfused (Transfused)
Platelets
Item
Platelet count
float
C0005821 (UMLS CUI [1])
CL Item
Not evaluated (Not evaluated)
CL Item
Untransfused (Untransfused )
CL Item
Transfused (Transfused)
Neutrophils
Item
Neutrophils
text
Reticulocytes
Item
Reticulocytes
float
Ferritin
Item
Ferritin
float
C0373607 (UMLS CUI [1])
Item
REASON FOR THIS TREATMENT
text
Code List
REASON FOR THIS TREATMENT
CL Item
Failure of first line therapy (Failure of first line therapy)
CL Item
Relapse (Relapse)
CL Item
PR to previous treatment (PR to previous treatment)
CL Item
Secondary clonal disorder (Secondary clonal disorder)
CL Item
Unknown (Unknown)
REASON FOR THIS TREATMENT
Item
if other, please specify
text
CL Item
ATG Origin (ATG Origin)
CL Item
Cyclosporin A (Cyclosporin A)
CL Item
Cyclophosphamide (Cyclophosphamide)
CL Item
Mycophenolate mofetil (Mycophenolate mofetil)
CL Item
Erythropoietin (Erythropoietin)
CL Item
Corticosteroid (Corticosteroid)
CL Item
Androgens (Androgens)
CL Item
Rituximab (Mabthera) (Rituximab (Mabthera))
CL Item
Alemtuzumab (Campath) (Alemtuzumab (Campath))
Medication
Item
If other, please specify
text
Item
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
text
Code List
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
CL Item
Complete remission (Complete remission )
CL Item
Partial remission (transfusion and growth factor independent) (Partial remission (transfusion and growth factor independent))
CL Item
No response (No response )
CL Item
Progression (Progression )
CL Item
Not evaluable (Not evaluable)
CL Item
Unknown (Unknown)
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
Item
if other, please specify
text
Date response evaluated
Item
Date response evaluated
date
SECONDARY CLONAL COMPLICATIONS
Item
SECONDARY CLONAL COMPLICATIONS
boolean
Date of diagnosis of MDS
Item
Date of diagnosis of MDS (if applicable)
date
MDS WHO classification
Item
MDS WHO classification
text
Date of diagnosis of PNH
Item
Date of diagnosis of PNH (if applicable)
date
Size of the PNH clone
Item
Size of the PNH clone
float
Item
Flow cytometry assessment done on
text
Code List
Flow cytometry assessment done on
CL Item
Granulocytes (Granulocytes )
CL Item
FLWCYTAA (FLWCYTAA )
CL Item
Not done (Not done)
Clinical manifestations of PNH
Item
Clinical manifestations of PNH
boolean
Date of diagnosis of other
Item
Date of diagnosis of other (if applicable)
date
HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT?
Item
HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT? If HSCT registration also, please proceed to “Status before HSCT” on page 6 If only Immunosuppressive treatment continue to follow-up form
boolean
Date treatment started
Item
Date treatment started
date
SEQUENTIAL NUMBER OF THIS TREATMENT EPISODE
Item
SEQUENTIAL NUMBER OF THIS TREATMENT EPISODE
text
Item
REASON FOR THIS TREATMENT
text
Code List
REASON FOR THIS TREATMENT
CL Item
Failure of first line therapy (Failure of first line therapy )
CL Item
Relapse (Relapse )
CL Item
PR to previous treatment (PR to previous treatment)
CL Item
Secondary clonal disorder (Secondary clonal disorder )
CL Item
Unknown (Unknown)
REASON FOR THIS TREATMENT
Item
if other, please specify
text
Haemoglobin
Item
Haemoglobin
float
C0019046 (UMLS CUI [1])
CL Item
Not evaluated (Not evaluated )
CL Item
Untransfused (Untransfused )
CL Item
Transfused (Transfused)
Platelets
Item
Platelet count
float
C0005821 (UMLS CUI [1])
CL Item
Not evaluated (Not evaluated)
CL Item
Untransfused (Untransfused )
CL Item
Transfused (Transfused)
Neutrophils
Item
Neutrophils
text
Reticulocytes
Item
Reticulocytes
float
Ferritin
Item
Ferritin
float
C0373607 (UMLS CUI [1])
Item
REASON FOR THIS TREATMENT
text
Code List
REASON FOR THIS TREATMENT
CL Item
Failure of first line therapy (Failure of first line therapy)
CL Item
Relapse (Relapse)
CL Item
PR to previous treatment (PR to previous treatment)
CL Item
Secondary clonal disorder (Secondary clonal disorder)
CL Item
Unknown (Unknown)
REASON FOR THIS TREATMENT
Item
if other, please specify
text
CL Item
ATG Origin (ATG Origin)
CL Item
Cyclosporin A (Cyclosporin A)
CL Item
Cyclophosphamide (Cyclophosphamide)
CL Item
Mycophenolate mofetil (Mycophenolate mofetil)
CL Item
Erythropoietin (Erythropoietin)
CL Item
Corticosteroid (Corticosteroid)
CL Item
Androgens (Androgens)
CL Item
Rituximab (Mabthera) (Rituximab (Mabthera))
CL Item
Alemtuzumab (Campath) (Alemtuzumab (Campath))
Medication
Item
If other, please specify
text
Item
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
text
Code List
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
CL Item
Complete remission (Complete remission )
CL Item
Partial remission (transfusion and growth factor independent) (Partial remission (transfusion and growth factor independent))
CL Item
No response (No response )
CL Item
Progression (Progression )
CL Item
Not evaluable (Not evaluable)
CL Item
Unknown (Unknown)
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
Item
if other, please specify
text
Date response evaluated
Item
Date response evaluated
date
SECONDARY CLONAL COMPLICATIONS
Item
SECONDARY CLONAL COMPLICATIONS
boolean
Date of diagnosis of MDS
Item
Date of diagnosis of MDS (if applicable)
date
MDS WHO classification
Item
MDS WHO classification
text
Date of diagnosis of PNH
Item
Date of diagnosis of PNH (if applicable)
date
Size of the PNH clone
Item
Size of the PNH clone
float
Item
Flow cytometry assessment done on
text
Code List
Flow cytometry assessment done on
CL Item
Granulocytes (Granulocytes )
CL Item
FLWCYTAA (FLWCYTAA )
CL Item
Not done (Not done)
Clinical manifestations of PNH
Item
Clinical manifestations of PNH
boolean
Date of diagnosis of other
Item
Date of diagnosis of other (if applicable)
date
HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT?
Item
HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT? If HSCT registration also, please proceed to “Status before HSCT” on page 6 If only Immunosuppressive treatment continue to follow-up form
boolean
Date of HSCT
Item
Date of HSCT
date
C2584899 (UMLS CUI [1])
Item
Chromosome analysis
text
C0200867 (UMLS CUI [1])
Code List
Chromosome analysis
CL Item
Done: abnormal (Done: abnormal)
CL Item
Done: normal (Done: normal)
CL Item
Not Done or failed (Not Done or failed)
CL Item
Unknown (Unknown)
Item
If done: Technique used
text
Code List
If done: Technique used
CL Item
Conventional (Conventional )
Number of metaphases with anomalies
Item
Number of metaphases with anomalies
text
number of metaphases examined
Item
number of metaphases examined
text
Item
IF ABNORMAL, INDICATE ABNORMALITIES FOUND (14:16)
integer
Code List
IF ABNORMAL, INDICATE ABNORMALITIES FOUND (14:16)
CL Item
Not evaluated (Not evaluated)
CL Item
Present (Present)
Other or associated abnormalities (specify)
Item
Other or associated abnormalities (specify)
text
Haemoglobin
Item
Haemoglobin
float
C0019046 (UMLS CUI [1])
Platelets
Item
Platelet count
float
C0005821 (UMLS CUI [1])
Neutrophils
Item
Neutrophils
integer
C0948762 (UMLS CUI [1])
Reticulocytes
Item
Reticulocytes
float
Ferritin
Item
Ferritin
float
C0373607 (UMLS CUI [1])
Item
Hemoglobin
integer
C0518015 (UMLS CUI [1])
CL Item
Not evaluated (1)
CL Item
Not evaluated (1)
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Item
Resistance to random platelets
text
Code List
Resistance to random platelets
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Item
Systemic infection
text
Code List
Systemic infection
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Date of PNH test
Item
Date of PNH test
date
Item
PNH diagnostics by flow cytometry
text
Code List
PNH diagnostics by flow cytometry
CL Item
Clone absent (Clone absent)
CL Item
Clone present (Clone present)
CL Item
Not evaluated (Not evaluated)
Size of the PNH
Item
Size of the PNH clone in %
text
Item
Flow cytometry assessment done on
text
Code List
Flow cytometry assessment done on
CL Item
Granulocytes (Granulocytes)
CL Item
Not done (Not done)
Flow cytometry assessment done on
Item
If other, please specify
text
PNH diagnostics by other test
Item
PNH diagnostics by other test, specify (if type of test unknown, write “unknown” here)
text
Item
PNH diagnostics by other test
text
Code List
PNH diagnostics by other test
CL Item
Clone absent (Clone absent)
CL Item
Clone present (Clone present)
CL Item
Not done (Not done)
Clinical manifestations of PNH
Item
Clinical manifestations of PNH
boolean
Item
RBC
integer
C0014772 (UMLS CUI [1])
CL Item
< 20 UNITS (< 20 UNITS)
CL Item
> 50 UNITS (> 50 UNITS)
CL Item
20-50 UNITS (20-50 UNITS)
CL Item
UNKNOWN (UNKNOWN)
CL Item
Unknown (Unknown)
Item
Platelets
integer
C0005821 (UMLS CUI [1])
Item
Platelets irradiated
text
Code List
Platelets irradiated
CL Item
Unknown (Unknown)
Item
Additional Disease Treatment
text
C1706712 (UMLS CUI [1])
Code List
Additional Disease Treatment
CL Item
Unknown (Unknown)
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)
Item
BEST RESPONSE AT 100 DAYS AFTER HSCT
text
Code List
BEST RESPONSE AT 100 DAYS AFTER HSCT
CL Item
Complete remission (Complete remission )
CL Item
Partial remission (transfusion and growth factor independent) (Partial remission (transfusion and growth factor independent))
CL Item
No response (No response )
CL Item
Progression (Progression )
CL Item
Not evaluable (Not evaluable)
CL Item
Unknown (Unknown)
BEST RESPONSE AT 100 DAYS AFTER HSCT
Item
if other, please specify
text
Date response evaluated
Item
Date response evaluated
date
Item
Type of HSCT (Check all that apply):
text
C0472699 (UMLS CUI [1])
Code List
Type of HSCT (Check all that apply):
CL Item
ALLOgraft or Synergenic graft, proceed to Allograft form (ALLOgraft or Synergenic graft, proceed to Allograft form)
CL Item
AUTOgraft, proceed to Autograft form (AUTOgraft, proceed to Autograft form)
CL Item
Other, contact the EBMT Central Registry Office for instructions (Other, contact the EBMT Central Registry Office for instructions)
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
CL Item
Not evaluated (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
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
date
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
aGvHD: Stage skin
text
C0856825 (UMLS CUI [1,1])
C0037274 (UMLS CUI [1,2])
Code List
aGvHD: Stage skin
CL Item
Evaluated (Evaluated)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
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)
Resolution
Item
aGvHD Resolution
boolean
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
CL Item
Limited (Limited )
CL Item
Extensive (Extensive)
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
if other type of pathogen, please specify
text
Item
NON INFECTION RELATED COMPLICATIONS
integer
C0009566 (UMLS CUI [1])
Code List
NON INFECTION RELATED COMPLICATIONS
CL Item
No complications (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
VOD
integer
C0948441 (UMLS CUI [1])
CL Item
Unknown (Unknown)
Item
Cataract
text
C0086543 (UMLS CUI [1])
CL Item
Unknown (Unknown)
Cataract
Item
Cataract
date
Item
Haemorrhagic cystitis, non infectious
text
Code List
Haemorrhagic cystitis, non infectious
CL Item
Unknown (Unknown)
Haemorrhagic cystitis, non infectious
Item
Haemorrhagic cystitis, non infectious
date
Item
Haemorrhagic cystitis, non infectious
text
C0085692 (UMLS CUI [1])
Code List
Haemorrhagic cystitis, non infectious
CL Item
Unknown (Unknown)
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
Multiorgan failure, non infectious
integer
C0026766 (UMLS CUI [1])
Code List
Multiorgan failure, non infectious
CL Item
unknown (unknown)
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
(Check all that are applicable for this period) if other, please specify
text
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
date
C0024671 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Identification of donor or Cord Blood Unit given by the centre
Item
Identification of donor or Cord Blood Unit given by the centre
text
Number in the infusion order
Item
Number in the infusion order (if applicable)
text
C0237753 (UMLS CUI [1])
Item
Number in the infusion order (if applicable)
integer
C2348184 (UMLS CUI [1])
Code List
Number in the infusion order (if applicable)
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): B-Cells
float
C0004561 (UMLS CUI [1])
B-Cells
Item
Cell type on which test was performed (% Donor cells): B-Cells
float
C0004561 (UMLS CUI [1])
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 Cell type
Item
if other, please specify
text
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)
Diagnosis
Item
if other, please specify
text
Additional treatment
Item
Treatment given since last report
boolean
C1706712 (UMLS CUI [1])
Date started
Item
Date started
date
Item
Cellular therapy
integer
C0302189 (UMLS CUI [1])
Code List
Cellular therapy
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)
Item
Type of cells
integer
C0302189 (UMLS CUI [1])
CL Item
Donor lymphocyte infusion (DLI) (1)
CL Item
Mesenchymal cells (2)
Nucleated cells
Item
Number of Nucleated cells infused (DLI only)
text
C1180059 (UMLS CUI [1])
Item
If DLI, specify the number of cells infused by type: Nucleated cells
text
C1180059 (UMLS CUI [1])
Code List
If DLI, specify the number of cells infused by type: Nucleated cells
CL Item
Evaluated (Evaluated)
CL Item
Not evaluated (Not evaluated)
CL Item
unknown (unknown)
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)
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
If non DLI, specify total number of cells infused:
text
C0007584 (UMLS CUI [1])
Code List
If non DLI, specify total number of cells infused:
CL Item
Evaluated (Evaluated)
CL Item
Not Evaluated (Not Evaluated)
CL Item
Unknown (Unknown)
Chronological number of this cell therapy for this patient
Item
Chronological number of this cell therapy for this patient
text
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)
Indication
Item
if other, please specify
text
Infusion count
Item
Number of infusions within 10 weeks (count only infusions that are part of same regimen and given for the same indication)
float
C0574032 (UMLS CUI [1,1])
C0750480 (UMLS CUI [1,2])
Item
Maximum grade
integer
CL Item
grade 0 (absent) (1)
CL Item
present, grade unknown (6)
Item
ADDITIONAL IMMUNOSUPPRESSIVE (DISEASE) TREATMENT
text
Code List
ADDITIONAL IMMUNOSUPPRESSIVE (DISEASE) TREATMENT
CL Item
No additional therapy except transfusions (No additional therapy except transfusions)
CL Item
Yes: Planned (planned before HSCT took place) (Yes: Planned (planned before HSCT took place) )
CL Item
Yes: Not planned (for relapse/progression or persistent disease) (Yes: Not planned (for relapse/progression or persistent disease))
SEQUENTIAL NUMBER OF THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
Item
SEQUENTIAL NUMBER OF THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
text
Item
REASON FOR THIS TREATMENT
text
Code List
REASON FOR THIS TREATMENT
CL Item
Failure of previous treatment (Failure of previous treatment )
CL Item
Relapse (Relapse )
CL Item
PR to previous treatment (PR to previous treatment)
CL Item
Secondary clonal disorder (Secondary clonal disorder )
CL Item
Unknown (Unknown)
Item
RBC
integer
C0014772 (UMLS CUI [1])
CL Item
< 20 UNITS (< 20 UNITS)
CL Item
> 50 UNITS (> 50 UNITS)
CL Item
20-50 UNITS (20-50 UNITS)
CL Item
UNKNOWN (UNKNOWN)
CL Item
Unknown (Unknown)
CL Item
<20 units (<20 units )
CL Item
20-50 units (20-50 units )
CL Item
>50 units (>50 units )
CL Item
unknown (unknown)
Item
Platelets irradiated
text
Code List
Platelets irradiated
CL Item
Unknown (Unknown)
Haemoglobin
Item
Haemoglobin
float
C0019046 (UMLS CUI [1])
Platelets
Item
Platelet count
float
C0005821 (UMLS CUI [1])
Neutrophils
Item
Neutrophils
integer
C0948762 (UMLS CUI [1])
Reticulocytes
Item
Reticulocytes
float
Ferritin
Item
Ferritin
float
C0373607 (UMLS CUI [1])
Item
Hemoglobin
integer
C0518015 (UMLS CUI [1])
CL Item
Not evaluated (1)
CL Item
Not evaluated (1)
CL Item
ATG Origin (ATG Origin)
CL Item
Cyclosporin A (Cyclosporin A)
CL Item
Cyclophosphamide (Cyclophosphamide)
CL Item
Mycophenolate mofetil (Mycophenolate mofetil)
CL Item
Erythropoietin (Erythropoietin)
CL Item
Corticosteroid (Corticosteroid)
CL Item
Androgens (Androgens)
CL Item
Rituximab (Mabthera) (Rituximab (Mabthera))
CL Item
Alemtuzumab (Campath) (Alemtuzumab (Campath))
Medication
Item
If other, please specify
text
Item
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
text
Code List
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
CL Item
Complete remission (Complete remission )
CL Item
Partial remission (transfusion and growth factor independent) (Partial remission (transfusion and growth factor independent))
CL Item
No response (No response )
CL Item
Progression (Progression )
CL Item
Not evaluable (Not evaluable)
CL Item
Unknown (Unknown)
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
Item
if other, please specify
text
Date response evaluated
Item
Date response evaluated
date
SECONDARY CLONAL COMPLICATIONS
Item
SECONDARY CLONAL COMPLICATIONS
boolean
Date of diagnosis of MDS
Item
Date of diagnosis of MDS (if applicable)
date
MDS WHO classification
Item
MDS WHO classification
text
Date of diagnosis of PNH
Item
Date of diagnosis of PNH (if applicable)
date
Size of the PNH clone
Item
Size of the PNH clone
float
Item
Flow cytometry assessment done on
text
Code List
Flow cytometry assessment done on
CL Item
Granulocytes (Granulocytes )
CL Item
FLWCYTAA (FLWCYTAA )
CL Item
Not done (Not done)
Clinical manifestations of PNH
Item
Clinical manifestations of PNH
boolean
Date of diagnosis of other
Item
Date of diagnosis of other (if applicable)
date
HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT?
Item
HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT? If HSCT registration also, please proceed to “Status before HSCT” on page 6 If only Immunosuppressive treatment continue to follow-up form
boolean
Item
Relapse or progression
integer
C0035020 (UMLS CUI [1,1])
C1704632 (UMLS CUI [1,2])
Code List
Relapse or progression
CL Item
Previously reported (1)
CL Item
Continuous progression since transplant (4)
RELAPSE OR PROGRESSION
Item
if yes, date diagnosed
date
Item
Last Disease Status
text
Code List
Last Disease Status
CL Item
No response (No response)
CL Item
Complete Remission (Complete Remission)
CL Item
Partial Remission (Partial Remission)
CL Item
Relapse/Progression (Relapse/Progression)
Date of PNH test
Item
Date of PNH test
date
Size of the PNH clone
Item
Size of the PNH clone in %
text
Item
Flow cytometry assessment done on
text
Code List
Flow cytometry assessment done on
CL Item
Granulocytes (Granulocytes )
CL Item
Not done (Not done)
Flow cytometry assessment done on
Item
if other, please specify
text
Clinical manifestations of PNH
Item
Clinical manifestations of PNH
boolean
Item
Has patient or partner become pregnant after this HSCT?
integer
Code List
Has patient or partner become pregnant after this HSCT?
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)
Cause of death
Item
Other cause of death:please specify
text
C0007465 (UMLS CUI [1])
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): GvHD
text
C0007465 (UMLS CUI [1,1])
C0018133 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): GvHD
CL Item
Unknown (Unknown)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Interstitial Pneumonitis
text
C0007465 (UMLS CUI [1,1])
C0206061 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Interstitial Pneumonitis
CL Item
Unknown (Unknown)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Pulmonary toxicity
text
C0007465 (UMLS CUI [1,1])
C0919924 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Pulmonary toxicity
CL Item
Unknown (Unknown)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Infection
text
C0007465 (UMLS CUI [1,1])
C0009450 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Infection
CL Item
Unknown (Unknown)
Infection:
Item
bacterial viral fungal parasitic unknown
text
Item
Rejection / poor graft function
integer
C0018129 (UMLS CUI [1])
Code List
Rejection / poor graft function
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Veno-Occlusive disease (VOD)
text
C0007465 (UMLS CUI [1,1])
C0948441 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Veno-Occlusive disease (VOD)
CL Item
Unknown (Unknown)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Haemorrhage
text
C0007465 (UMLS CUI [1,1])
C0019080 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Haemorrhage
CL Item
Unknown (Unknown)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Cardiac toxicity
text
C0007465 (UMLS CUI [1,1])
C0876994 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Cardiac toxicity
CL Item
Unknown (Unknown)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Central nervous system toxicity
text
C0007465 (UMLS CUI [1,1])
C3160947 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Central nervous system toxicity
CL Item
Unknown (Unknown)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Gastro intestinal toxicity
text
C0007465 (UMLS CUI [1,1])
C1142499 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Gastro intestinal toxicity
CL Item
Unknown (Unknown)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Skin toxicity
text
C0007465 (UMLS CUI [1,1])
C1167791 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Skin toxicity
CL Item
Unknown (Unknown)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Renal failure
text
C0007465 (UMLS CUI [1,1])
C0035078 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Renal failure
CL Item
Unknown (Unknown)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Multiple organ failure
text
C0007465 (UMLS CUI [1,1])
C0026766 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Multiple organ failure
CL Item
Unknown (Unknown)
COMMENTS
Item
COMMENTS
text
IDENTIFICATION & SIGNATURE
Item
IDENTIFICATION & SIGNATURE
text