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ID
42041
Beskrivning
ODM form derived from 19pp General Info EBMT Aplastic Anemia 06AA please refer to: http://www.ebmt.org/Contents/Data-Management/Registrystructure/MED-ABdatacollectionforms/Pages/MED-AB-data-collection-forms.aspx
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Nyckelord
Versioner (5)
- 2016-07-25 2016-07-25 -
- 2016-08-04 2016-08-04 -
- 2017-11-28 2017-11-28 - Julian Varghese
- 2021-03-15 2021-03-15 - Dr. rer. medic Philipp Neuhaus
- 2021-09-20 2021-09-20 -
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EBMT
Uppladdad den
15 mars 2021
DOI
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Creative Commons BY-NC 3.0
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16760_General Info EBMT Aplastic Anemia
General Info EBMT Aplastic Anemia
- StudyEvent: ODM
Similar models
General Info EBMT Aplastic Anemia
- StudyEvent: ODM
Name
Typ
Description | Question | Decode (Coded Value)
Datatyp
Alias
EBMT Centre Identification Code (CIC)
Item
EBMT Centre Identification Code (CIC)
integer
C2348585 (UMLS CUI [1,1])
C3826859 (UMLS CUI [1,2])
C3826859 (UMLS CUI [1,2])
Hospital
Item
Name of the hospital
text
C0019994 (UMLS CUI [1])
Unit
Item
Unit
integer
C1519795 (UMLS CUI [1])
Contact person
Item
Name of contact person
text
C0337611 (UMLS CUI [1])
Telephone
Item
Telephone number
integer
C1515258 (UMLS CUI [1])
Fax
Item
Fax
integer
C1549619 (UMLS CUI [1])
E-mail
Item
E-mail
integer
C1705961 (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
no (1)
C1298908 (UMLS CUI-1)
CL Item
yes (2)
C1705108 (UMLS CUI-1)
CL Item
unknown (3)
C0439673 (UMLS CUI-1)
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])
CL Item
Male (1)
C1706180 (UMLS CUI-1)
CL Item
Female (2)
C0015780 (UMLS CUI-1)
ABO Group
Item
ABO Group
integer
C0000778 (UMLS CUI [1])
CL Item
Absent (1)
C2699077 (UMLS CUI-1)
CL Item
Present (2)
C2699078 (UMLS CUI-1)
CL Item
Not evaluated (3)
C3846720 (UMLS CUI-1)
Date of diagnosis
Item
Date of diagnosis
date
C2316983 (UMLS CUI [1,1])
C1274082 (UMLS CUI [1,2])
C1274082 (UMLS CUI [1,2])
Item
Check the disease for which this transplant was performed
text
C0277554 (UMLS CUI [1])
CL Item
Acute Leukaemia (Acute Leukaemia)
C0085669 (UMLS CUI-1)
CL Item
Acute Lymphoblastic Leukaemia (ALL) (Acute Lymphoblastic Leukaemia (ALL))
C0023449 (UMLS CUI-1)
CL Item
Acute Myelogenous Leukaemia (AML) (Acute Myelogenous Leukaemia (AML))
C0023467 (UMLS CUI-1)
CL Item
Autoimmune disease (Autoimmune disease)
C0004364 (UMLS CUI-1)
CL Item
Bone marrow failure including Aplastic anaemia (Bone marrow failure including Aplastic anaemia)
C0002874 (UMLS CUI-1)
CL Item
Chronic Leukaemia (Chronic Leukaemia)
C0856053 (UMLS CUI-1)
CL Item
Chronic Lymphocytic Leukaemia (Chronic Lymphocytic Leukaemia)
C0023434 (UMLS CUI-1)
CL Item
Chronic Myeloid Leukaemia (CML) (Chronic Myeloid Leukaemia (CML))
C0023473 (UMLS CUI-1)
CL Item
Haemoglobinopathy (Haemoglobinopathiy)
C0019045 (UMLS CUI-1)
CL Item
Histiocytic disorders (Histiocytic disorders)
C0398597 (UMLS CUI-1)
CL Item
Hodgkin´s Disease (Hodgkin´s Disease)
C0019829 (UMLS CUI-1)
CL Item
Inherited disorders (Inherited disorders)
C0019247 (UMLS CUI-1)
CL Item
Juvenile Idiopathic Arthritis (Juvenile Idiopathic Arthritis)
C1444841 (UMLS CUI-1)
CL Item
Lymphoma (Lymphoma)
C0024299 (UMLS CUI-1)
CL Item
MD/ MPN (MD/ MPN)
C1292778 (UMLS CUI-1)
CL Item
MDS (MDS)
C3463824 (UMLS CUI-1)
CL Item
Metabolic disorders (Metabolic disorders)
C0025517 (UMLS CUI-1)
CL Item
Multiple Sclerosis (Multiple Sclerosis)
C0026769 (UMLS CUI-1)
CL Item
Myelodysplastic syndromes (Myelodysplastic syndromes)
C0280450 (UMLS CUI-1)
CL Item
Myeloma/ Plasma cell disorder (Myeloma/ Plasma cell disorder)
C0026764 (UMLS CUI-1)
CL Item
Myeloproliferative neoplasm (Myeloproliferative neoplasm)
C1333046 (UMLS CUI-1)
CL Item
Non Hodgkin (Non Hodgkin)
C0024305 (UMLS CUI-1)
CL Item
Other diagnosis (Other diagnosis)
C0205394 (UMLS CUI-1)
CL Item
Primary immune deficiencies (Primary immune deficiencies)
C0398686 (UMLS CUI-1)
CL Item
Secondary Acute Leukaemia (do not use if transformed from MDS/MPN) (Secondary Acute Leukaemia (do not use if transformed from MDS/MPN))
C0856053 (UMLS CUI-1)
CL Item
Solid Tumour (Solid Tumour)
C0006826 (UMLS CUI-1)
CL Item
Systemic Lupus (Systemic Lupus)
C0024141 (UMLS CUI-1)
CL Item
Systemic Sclerosis (Systemic Sclerosis)
C0036421 (UMLS CUI-1)
Item Group
BONE MARROW FAILURE SYNDROME (INCLUDING APLASTIC ANAEMIA)
Item
TYPE OF TREATMENT BEING REGISTERED WITH THIS FORM
integer
C0087111 (UMLS CUI [1])
Code List
TYPE OF TREATMENT BEING REGISTERED WITH THIS FORM
CL Item
Includes HSCT registration (Includes HSCT registration)
CL Item
Immunosuppressive therapy (IS) (Immunosuppressive therapy (IS))
Acquired
Item
Acquired
boolean
C0439661 (UMLS CUI [1])
CL Item
Moderate (Moderate)
C0205081 (UMLS CUI-1)
CL Item
Severe (Severe)
C0205082 (UMLS CUI-1)
CL Item
Very severe (Very severe)
C3641272 (UMLS CUI-1)
Pure red cell aplasia (non constitutional PRCA)
Item
Pure red cell aplasia (non constitutional PRCA)
boolean
C0034902 (UMLS CUI [1])
Paroxysmal nocturnal haemoglobinuria (PNH)
Item
Paroxysmal nocturnal haemoglobinuria (PNH)
boolean
C0024790 (UMLS CUI [1])
Haemolytic
Item
Haemolytic
boolean
C0002878 (UMLS CUI [1])
Aplastic
Item
Aplastic
boolean
C1368107 (UMLS CUI [1])
Thrombotic
Item
Thrombotic
boolean
C2674163 (UMLS CUI [1])
Pure white cell aplasia
Item
Pure white cell aplasia
boolean
C2242624 (UMLS CUI [1])
Amegakaryocytic thrombocytopenia (non constitutional)
Item
Amegakaryocytic thrombocytopenia (non constitutional)
boolean
C0398639 (UMLS CUI [1])
Genetic
Item
Genetic
boolean
C0813145 (UMLS CUI [1])
Fanconi
Item
Fanconi
boolean
C0015625 (UMLS CUI [1])
FANC complementation group
Item
FANC complementation group
integer
C1563385 (UMLS CUI [1])
Diamond-Blackfan (congenital / constitutional PRCA)
Item
Diamond-Blackfan (congenital / constitutional PRCA)
boolean
C1260899 (UMLS CUI [1])
Shwachman-Diamond Syndrome
Item
Shwachman-Diamond Syndrome
boolean
C0272170 (UMLS CUI [1])
Dyserythropoietic Anaemia
Item
Dyserythropoietic Anaemia
boolean
C0002876 (UMLS CUI [1])
Dyskeratosis congenita
Item
Dyskeratosis congenita
boolean
C0265965 (UMLS CUI [1])
Amegakaryocytic thrombocytopenia
Item
Amegakaryocytic thrombocytopenia
boolean
C0398639 (UMLS CUI [1])
CL Item
Idiopathic (Idiopathic)
C0332240 (UMLS CUI-1)
CL Item
Post-hepatitis (Post-hepatitis)
C0687676 (UMLS CUI-1)
C0019158 (UMLS CUI-2)
C0019158 (UMLS CUI-2)
CL Item
Toxic (includes drug induced) (Toxic (includes drug induced))
C0600688 (UMLS CUI-1)
CL Item
Other (Other)
C0205394 (UMLS CUI-1)
CL Item
Done: abnormal (Done: abnormal)
C0476431 (UMLS CUI-1)
CL Item
Done: normal (Done: normal)
C0428095 (UMLS CUI-1)
CL Item
Not Done or failed (Not Done or failed)
C1272696 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
Item
CYTOGENETICS If done: Technique used
integer
C0010802 (UMLS CUI [1,1])
C0449851 (UMLS CUI [1,2])
C0449851 (UMLS CUI [1,2])
CL Item
Conventional (Conventional )
C0439858 (UMLS CUI-1)
CL Item
FISH (FISH )
C0162789 (UMLS CUI-1)
CL Item
Both (Both)
C1706086 (UMLS CUI-1)
Number of metaphases with anomalies
Item
Number of metaphases with anomalies
integer
C1621812 (UMLS CUI [1,1])
C0449788 (UMLS CUI [1,2])
C0449788 (UMLS CUI [1,2])
number of metaphases examined
Item
number of metaphases examined
integer
C0582103 (UMLS CUI [1,1])
C1621812 (UMLS CUI [1,2])
C1621812 (UMLS CUI [1,2])
CL Item
Absent (1)
C0332197 (UMLS CUI-1)
CL Item
Present (2)
C0150312 (UMLS CUI-1)
CL Item
Absent (Absent )
C1519652 (UMLS CUI-1)
CL Item
Present (Present)
C0150312 (UMLS CUI-1)
Other or associated abnormalities (specify)
Item
Other or associated abnormalities (specify)
integer
C0008625 (UMLS CUI [1])
Item
Chromosomal breakage test (for Fanconi)
integer
C0398791 (UMLS CUI [1])
CL Item
Negative (Negative )
C0205160 (UMLS CUI-1)
CL Item
Positive (Positive )
C1446409 (UMLS CUI-1)
CL Item
Not evaluated (Not evaluated)
C3846720 (UMLS CUI-1)
Haemoglobin
Item
Haemoglobin
float
C0518015 (UMLS CUI [1])
Platelets
Item
Platelet count
float
C0005821 (UMLS CUI [1])
Neutrophils
Item
Neutrophils
integer
C0948762 (UMLS CUI [1])
Reticulocytes
Item
Reticulocytes
float
C0035286 (UMLS CUI [1])
Ferritin
Item
Ferritin
float
C0015879 (UMLS CUI [1])
CL Item
Not evaluated (1)
C3846720 (UMLS CUI-1)
CL Item
Untransfused (2)
CL Item
Transfused (3)
C0450441 (UMLS CUI-1)
CL Item
Not evaluated (1)
CL Item
Untransfused (2)
CL Item
Transfused (3)
CL Item
Yes (Yes )
C1705108 (UMLS CUI-1)
CL Item
No (No )
C1298908 (UMLS CUI-1)
CL Item
Not evaluated (Not evaluated )
C3846720 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
CL Item
Yes (Yes )
C1705108 (UMLS CUI-1)
CL Item
No (No )
C1298908 (UMLS CUI-1)
CL Item
Not evaluated (Not evaluated )
C3846720 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
CL Item
Yes (Yes )
CL Item
No (No )
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Date of PNH test
Item
Date of PNH test
date
C0024790 (UMLS CUI [1,1])
C2826247 (UMLS CUI [1,2])
C2826247 (UMLS CUI [1,2])
Item
PNH diagnostics by flow cytometry
integer
C0024790 (UMLS CUI [1,1])
C0016263 (UMLS CUI [1,2])
C0016263 (UMLS CUI [1,2])
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 %
integer
C0024790 (UMLS CUI [1,1])
C0456389 (UMLS CUI [1,2])
C0456389 (UMLS CUI [1,2])
Item
Flow cytometry assessment done on
integer
C0016263 (UMLS CUI [1])
CL Item
Granulocytes (Granulocytes)
CL Item
RBC (RBC)
CL Item
Both (Both)
CL Item
Other (Other)
CL Item
Not done (Not done)
PNH diagnostics by other test
Item
PNH diagnostics by other test, specify
integer
C0022885 (UMLS CUI [1,1])
C0024790 (UMLS CUI [1,2])
C3845569 (UMLS CUI [1,3])
C0024790 (UMLS CUI [1,2])
C3845569 (UMLS CUI [1,3])
Item
PNH diagnostics by other test
integer
C0022885 (UMLS CUI [1,1])
C0024790 (UMLS CUI [1,2])
C0024790 (UMLS CUI [1,2])
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
C0024790 (UMLS CUI [1])
Item
WAS THE PATIENT TREATED BEFORE THE HSCT PROCEDURE?
integer
C1514463 (UMLS CUI [1])
Code List
WAS THE PATIENT TREATED BEFORE THE HSCT PROCEDURE?
CL Item
No (1)
C1298908 (UMLS CUI-1)
CL Item
Date started (2)
C3173309 (UMLS CUI-1)
FIRST TREATMENT EPISODE FOR THIS REGISTRATION
Item
Date treatment started
date
C3173309 (UMLS CUI [1,1])
C0392920 (UMLS CUI [1,2])
C0392920 (UMLS CUI [1,2])
SEQUENTIAL NUMBER
Item
SEQUENTIAL NUMBER OF THIS TREATMENT EPISODE (Other treatment episodes can have been registered for this patient with previous data submissions)
integer
C1115395 (UMLS CUI [1])
Item Group
IF 1ST TREATMENT EPISODE FOR THE PATIENT EVER
CL Item
< 20 UNITS (< 20 UNITS)
CL Item
> 50 UNITS (> 50 UNITS)
CL Item
20-50 UNITS (20-50 UNITS)
CL Item
NONE (NONE)
CL Item
UNKNOWN (UNKNOWN)
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
CL Item
NONE (1)
CL Item
< 20 UNITS (2)
CL Item
20-50 UNITS (3)
CL Item
> 50 UNITS (4)
CL Item
UNKNOWN (5)
CL Item
No (No)
C1298908 (UMLS CUI-1)
CL Item
Yes (Yes)
C1705108 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (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
integer
C0948762 (UMLS CUI [1])
Reticulocytes
Item
Reticulocytes
float
C0035286 (UMLS CUI [1])
Ferritin
Item
Ferritin
float
C0373607 (UMLS CUI [1])
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
Other (Other)
CL Item
Unknown (Unknown)
CL Item
ATG Origin (ATG Origin)
CL Item
Cyclosporin A (Cyclosporin A)
C0010592 (UMLS CUI-1)
CL Item
Cyclophosphamide (Cyclophosphamide)
C0010583 (UMLS CUI-1)
CL Item
Mycophenolate mofetil (Mycophenolate mofetil)
C0209368 (UMLS CUI-1)
CL Item
G-CSF (G-CSF)
C0079459 (UMLS CUI-1)
CL Item
Erythropoietin (Erythropoietin)
C0014822 (UMLS CUI-1)
CL Item
Corticosteroid (Corticosteroid)
C0001617 (UMLS CUI-1)
CL Item
Androgens (Androgens)
C0002844 (UMLS CUI-1)
CL Item
Rituximab (Rituximab (Mabthera))
C0393022 (UMLS CUI-1)
CL Item
Alemtuzumab (Alemtuzumab (Campath))
C0383429 (UMLS CUI-1)
CL Item
Other (Other)
C0205394 (UMLS CUI-1)
Item
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
integer
C0521982 (UMLS CUI [1])
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
Other (Other)
CL Item
Unknown (Unknown)
Date response evaluated
Item
Date response evaluated
date
C1269701 (UMLS CUI [1,1])
C1269701 (UMLS CUI [1,2])
C1269701 (UMLS CUI [1,2])
SECONDARY CLONAL COMPLICATIONS
Item
SECONDARY CLONAL COMPLICATIONS
boolean
C2939419 (UMLS CUI [1])
Date of diagnosis of MDS
Item
Date of diagnosis of MDS (if applicable)
date
C3463824 (UMLS CUI [1,1])
C2316983 (UMLS CUI [1,2])
C2316983 (UMLS CUI [1,2])
MDS WHO classification
Item
MDS WHO classification
integer
C1301142 (UMLS CUI [1,1])
C3463824 (UMLS CUI [1,2])
C3463824 (UMLS CUI [1,2])
Date of diagnosis of PNH
Item
Date of diagnosis of PNH (if applicable)
date
C0024790 (UMLS CUI [1,1])
C2826247 (UMLS CUI [1,2])
C2826247 (UMLS CUI [1,2])
Size of the PNH clone
Item
Size of the PNH clone
float
C0024790 (UMLS CUI [1,1])
C0456389 (UMLS CUI [1,2])
C0456389 (UMLS CUI [1,2])
Item
Flow cytometry assessment done on
integer
C0016263 (UMLS CUI [1])
CL Item
Granulocytes (Granulocytes )
CL Item
RBC (RBC )
CL Item
Both (Both)
CL Item
Other (Other)
CL Item
FLWCYTAA (FLWCYTAA )
CL Item
Not done (Not done)
Clinical manifestations of PNH
Item
Clinical manifestations of PNH
boolean
C0024790 (UMLS CUI [1])
HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT?
Item
HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT?
boolean
C0279085 (UMLS CUI [1])
Item Group
ADDITIONAL IMMUNOSUPPRESSIVE TREATMENT EPISODE
Date treatment started
Item
Date treatment started
date
SEQUENTIAL NUMBER OF THIS TREATMENT EPISODE
Item
SEQUENTIAL NUMBER OF THIS TREATMENT EPISODE
text
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
Other (Other )
CL Item
Unknown (Unknown)
REASON FOR THIS TREATMENT
Item
if other, please specify
text
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
integer
C0948762 (UMLS CUI [1])
Reticulocytes
Item
Reticulocytes
float
C0035286 (UMLS CUI [1])
Ferritin
Item
Ferritin
float
C0373607 (UMLS CUI [1])
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
Other (Other)
CL Item
Unknown (Unknown)
CL Item
ATG Origin (ATG Origin)
CL Item
Cyclosporin A (Cyclosporin A)
C0010592 (UMLS CUI-1)
CL Item
Cyclophosphamide (Cyclophosphamide)
C0010583 (UMLS CUI-1)
CL Item
Mycophenolate mofetil (Mycophenolate mofetil)
C0209368 (UMLS CUI-1)
CL Item
G-CSF (G-CSF)
C0079459 (UMLS CUI-1)
CL Item
Erythropoietin (Erythropoietin)
C0014822 (UMLS CUI-1)
CL Item
Corticosteroid (Corticosteroid)
C0001617 (UMLS CUI-1)
CL Item
Androgens (Androgens)
C0002844 (UMLS CUI-1)
CL Item
Rituximab (Rituximab (Mabthera))
C0393022 (UMLS CUI-1)
CL Item
Alemtuzumab (Alemtuzumab (Campath))
C0383429 (UMLS CUI-1)
CL Item
Other (Other)
C0205394 (UMLS CUI-1)
Item
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
integer
C0521982 (UMLS CUI [1])
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
Other (Other)
CL Item
Unknown (Unknown)
Date response evaluated
Item
Date response evaluated
date
C1269701 (UMLS CUI [1,1])
C1269701 (UMLS CUI [1,2])
C1269701 (UMLS CUI [1,2])
SECONDARY CLONAL COMPLICATIONS
Item
SECONDARY CLONAL COMPLICATIONS
boolean
C2939419 (UMLS CUI [1])
Date of diagnosis of MDS
Item
Date of diagnosis of MDS (if applicable)
date
C3463824 (UMLS CUI [1,1])
C2316983 (UMLS CUI [1,2])
C2316983 (UMLS CUI [1,2])
MDS WHO classification
Item
MDS WHO classification
integer
C1301142 (UMLS CUI [1,1])
C3463824 (UMLS CUI [1,2])
C3463824 (UMLS CUI [1,2])
Date of diagnosis of PNH
Item
Date of diagnosis of PNH (if applicable)
date
C0024790 (UMLS CUI [1,1])
C2826247 (UMLS CUI [1,2])
C2826247 (UMLS CUI [1,2])
Size of the PNH clone
Item
Size of the PNH clone
float
C0024790 (UMLS CUI [1,1])
C0456389 (UMLS CUI [1,2])
C0456389 (UMLS CUI [1,2])
Item
Flow cytometry assessment done on
integer
C0016263 (UMLS CUI [1])
CL Item
Granulocytes (Granulocytes )
CL Item
RBC (RBC )
CL Item
Both (Both)
CL Item
Other (Other)
CL Item
FLWCYTAA (FLWCYTAA )
CL Item
Not done (Not done)
Clinical manifestations of PNH
Item
Clinical manifestations of PNH
boolean
C0024790 (UMLS CUI [1])
HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT?
Item
HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT?
boolean
C0279085 (UMLS CUI [1])
Date of HSCT
Item
Date of HSCT
date
C2584899 (UMLS CUI [1])
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
Chromosome analysis: If done: Technique used
integer
C0200867 (UMLS CUI [1,1])
C0200888 (UMLS CUI [1,2])
C0200888 (UMLS CUI [1,2])
CL Item
Conventional (Conventional )
CL Item
FISH (FISH )
CL Item
Both (Both)
Number of metaphases with anomalies
Item
Number of metaphases with anomalies
integer
C1621812 (UMLS CUI [1,1])
C0449788 (UMLS CUI [1,2])
C0449788 (UMLS CUI [1,2])
number of metaphases examined
Item
number of metaphases examined
integer
C1621812 (UMLS CUI [1,1])
C0449788 (UMLS CUI [1,2])
C0449788 (UMLS CUI [1,2])
CL Item
Absent (Absent)
C0332197 (UMLS CUI-1)
CL Item
Not evaluated (Not evaluated)
C3846720 (UMLS CUI-1)
CL Item
Present (Present)
C0150312 (UMLS CUI-1)
Other or associated abnormalities (specify)
Item
Other or associated abnormalities (specify)
text
Haemoglobin
Item
Haemoglobin
float
C0518015 (UMLS CUI [1])
Platelets
Item
Platelet count
float
C0005821 (UMLS CUI [1])
Neutrophils
Item
Neutrophils
integer
C0948762 (UMLS CUI [1])
Reticulocytes
Item
Reticulocytes
float
C0035286 (UMLS CUI [1])
Ferritin
Item
Ferritin
float
C0015879 (UMLS CUI [1])
CL Item
Not evaluated (1)
C3846720 (UMLS CUI-1)
CL Item
Untransfused (2)
CL Item
Transfused (3)
C0450441 (UMLS CUI-1)
CL Item
Not evaluated (1)
CL Item
Untransfused (2)
CL Item
Transfused (3)
CL Item
Yes (Yes )
C1705108 (UMLS CUI-1)
CL Item
No (No )
C1298908 (UMLS CUI-1)
CL Item
Not evaluated (Not evaluated )
C3846720 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
CL Item
Yes (Yes )
C1705108 (UMLS CUI-1)
CL Item
No (No )
C1298908 (UMLS CUI-1)
CL Item
Not evaluated (Not evaluated )
C3846720 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
CL Item
Yes (Yes )
CL Item
No (No )
CL Item
Not evaluated (Not evaluated )
CL Item
Unknown (Unknown)
Date of PNH test
Item
Date of PNH test
date
C0024790 (UMLS CUI [1,1])
C2826247 (UMLS CUI [1,2])
C2826247 (UMLS CUI [1,2])
Item
PNH diagnostics by flow cytometry
integer
C0024790 (UMLS CUI [1,1])
C0016263 (UMLS CUI [1,2])
C0016263 (UMLS CUI [1,2])
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 %
integer
C0024790 (UMLS CUI [1,1])
C0456389 (UMLS CUI [1,2])
C0456389 (UMLS CUI [1,2])
Item
Flow cytometry assessment done on
integer
C0016263 (UMLS CUI [1])
CL Item
Granulocytes (Granulocytes)
CL Item
RBC (RBC)
CL Item
Both (Both)
CL Item
Other (Other)
CL Item
Not done (Not done)
PNH diagnostics by other test
Item
PNH diagnostics by other test, specify
integer
C0022885 (UMLS CUI [1,1])
C0024790 (UMLS CUI [1,2])
C3845569 (UMLS CUI [1,3])
C0024790 (UMLS CUI [1,2])
C3845569 (UMLS CUI [1,3])
Item
PNH diagnostics by other test
integer
C0022885 (UMLS CUI [1,1])
C0024790 (UMLS CUI [1,2])
C0024790 (UMLS CUI [1,2])
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
C0024790 (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
NONE (NONE)
CL Item
UNKNOWN (UNKNOWN)
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
CL Item
NONE (1)
CL Item
< 20 UNITS (2)
CL Item
20-50 UNITS (3)
CL Item
> 50 UNITS (4)
CL Item
UNKNOWN (5)
CL Item
No (No)
C1298908 (UMLS CUI-1)
CL Item
Yes (Yes)
C1705108 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Item
ADDITIONAL DISEASE TREATMENT if yes
integer
C1706712 (UMLS CUI [1])
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
integer
C1704632 (UMLS CUI [1])
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
Other (Other)
CL Item
Unknown (Unknown)
BEST RESPONSE AT 100 DAYS AFTER HSCT
Item
BEST RESPONSE AT 100 DAYS AFTER HSCT: if other, please specify
integer
C1704632 (UMLS CUI [1,1])
C3845569 (UMLS CUI [1,2])
C3845569 (UMLS CUI [1,2])
Date response evaluated
Item
Date response evaluated
date
C0011008 (UMLS CUI [1,1])
C1269701 (UMLS CUI [1,2])
C1269701 (UMLS CUI [1,2])
CL Item
ALLOgraft or Synergenic graft, proceed to Allograft form (ALLOgraft or Synergenic graft, proceed to Allograft form)
C0040739 (UMLS CUI-1)
CL Item
AUTOgraft, proceed to Autograft form (AUTOgraft, proceed to Autograft form)
C0040736 (UMLS CUI-1)
CL Item
Other, contact the EBMT Central Registry Office for instructions (Other, contact the EBMT Central Registry Office for instructions)
C0205394 (UMLS CUI-1)