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ID
16459
Description
ODM form derived from 15pp EBMT MYELOPROLIFERATIVE NEOPLASM please refer to: http://www.ebmt.org/Contents/Data-Management/Registrystructure/MED-ABdatacollectionforms/Pages/MED-AB-data-collection-forms.aspx
Link
Keywords
Versions (3)
- 9/27/17 9/27/17 -
- 7/17/16 7/17/16 -
- 6/20/17 6/20/17 - Martin Dugas
Uploaded on
July 17, 2016
DOI
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License
Creative Commons BY-NC 3.0
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MYELOPROLIFERATIVE NEOPLASM EBMT General Information
MYELOPROLIFERATIVE NEOPLASM EBMT General Information
- StudyEvent: ODM
Similar models
MYELOPROLIFERATIVE NEOPLASM EBMT General Information
- StudyEvent: ODM
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
EBMT Centre Identification Code
Item
EBMT Centre Identification Code (CIC)
text
C3826859 (UMLS CUI [1,1])
C1827636 (UMLS CUI [1,2])
C1827636 (UMLS CUI [1,2])
Hospital
Item
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 of contact person
text
C1515258 (UMLS CUI [1])
Fax
Item
Fax
integer
C0085205 (UMLS CUI [1])
E-mail
Item
E-mail
integer
C0013849 (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])
CL Item
No (1)
C1298908 (UMLS CUI-1)
CL Item
Yes (2)
C1705108 (UMLS CUI-1)
CL Item
Not evaluated (3)
C3846720 (UMLS CUI-1)
CL Item
Unknown (4)
C0439673 (UMLS CUI-1)
Name of study / trial
Item
Name of study / trial
integer
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 (Male)
C1706180 (UMLS CUI-1)
CL Item
Female (Female)
C0015780 (UMLS CUI-1)
ABO Group
Item
ABO Group
integer
C0000778 (UMLS CUI [1])
CL Item
Absent (Absent)
CL Item
Present (Present)
CL Item
Not evaluated (Not evaluated)
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])
CL Item
Acute Leukaemia (Acute Leukaemia)
C0085669 (UMLS CUI-1)
CL Item
Acute Myelogenous Leukaemia (AML) (Acute Myelogenous Leukaemia (AML))
C0023467 (UMLS CUI-1)
CL Item
Acute Lymphoblastic Leukaemia (ALL) (Acute Lymphoblastic Leukaemia (ALL))
C0023449 (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
Chronic Leukaemia (Chronic Leukaemia)
C0856053 (UMLS CUI-1)
CL Item
Chronic Myeloid Leukaemia (CML) (Chronic Myeloid Leukaemia (CML))
C0023473 (UMLS CUI-1)
CL Item
Chronic Lymphocytic Leukaemia (Chronic Lymphocytic Leukaemia)
C0023434 (UMLS CUI-1)
CL Item
Lymphoma (Lymphoma)
C0024299 (UMLS CUI-1)
CL Item
Non Hodgkin (Non Hodgkin)
C0024305 (UMLS CUI-1)
CL Item
Hodgkin´s Disease (Hodgkin´s Disease)
C0019829 (UMLS CUI-1)
CL Item
Myeloma/ Plasma cell disorder (Myeloma/ Plasma cell disorder)
C0026764 (UMLS CUI-1)
CL Item
Solid Tumour (Solid Tumour)
C0006826 (UMLS CUI-1)
CL Item
Myelodysplastic syndromes (Myelodysplastic syndromes)
C0280450 (UMLS CUI-1)
CL Item
MDS (MDS)
C3463824 (UMLS CUI-1)
CL Item
MD/ MPN (MD/ MPN)
C1292778 (UMLS CUI-1)
CL Item
Myeloproliferative neoplasm (Myeloproliferative neoplasm)
C1333046 (UMLS CUI-1)
CL Item
Bone marrow failure including Aplastic anaemia (Bone marrow failure including Aplastic anaemia)
C0002874 (UMLS CUI-1)
CL Item
Inherited disorders (Inherited disorders)
C0019247 (UMLS CUI-1)
CL Item
Primary immune deficiencies (Primary immune deficiencies)
C0398686 (UMLS CUI-1)
CL Item
Metabolic disorders (Metabolic disorders)
C0025517 (UMLS CUI-1)
CL Item
Histiocytic disorders (Histiocytic disorders)
C0398597 (UMLS CUI-1)
CL Item
Autoimmune disease (Autoimmune disease)
C0004364 (UMLS CUI-1)
CL Item
Juvenile Idiopathic Arthritis (Juvenile Idiopathic Arthritis)
C1444841 (UMLS CUI-1)
CL Item
Multiple Sclerosis (Multiple Sclerosis)
C0026769 (UMLS CUI-1)
CL Item
Systemic Lupus (Systemic Lupus)
C0024141 (UMLS CUI-1)
CL Item
Systemic Sclerosis (Systemic Sclerosis)
C0036421 (UMLS CUI-1)
CL Item
Hemoglobinopathies (Haemoglobinopathiy)
C0019045 (UMLS CUI-1)
CL Item
Other diagnosis (Other diagnosis)
C0205394 (UMLS CUI-1)
Primary Disease Diagnosis
Item
If other diagnosis, specify:
text
C0277554 (UMLS CUI [1,1])
C2348235 (UMLS CUI [1,2])
C2348235 (UMLS CUI [1,2])
Item Group
SPECIFICATIONS OF THE DISEASE MYELOPROLIFERATIVE NEOPLASM DIAGNOSIS
Item
SUBCLASSIFICATION Myeloproliferative neoplasm
integer
C0027022 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
C0008902 (UMLS CUI [1,2])
CL Item
Chronic idiopathic myelofibrosis or Primary myelofibrosis (1)
C0001815 (UMLS CUI-1)
CL Item
Polycythaemia vera (2)
C0032463 (UMLS CUI-1)
CL Item
Essential thrombocythemia (3)
C0040028 (UMLS CUI-1)
CL Item
Hyper eosinophilic syndrome (HES) (4)
C0206141 (UMLS CUI-1)
CL Item
Chronic eosinophilic leukaemia (CEL) (5)
C0346421 (UMLS CUI-1)
CL Item
Chronic neutrophilic leukaemia (6)
C0023481 (UMLS CUI-1)
CL Item
Stem cell leukemia-Lymphoma syndrome (8p11 syndrome) (7)
C2827362 (UMLS CUI-1)
CL Item
Systemic mastocytosis (8)
C0221013 (UMLS CUI-1)
CL Item
Mast cell leukaemia (9)
C0023461 (UMLS CUI-1)
CL Item
Mast cell sarcoma (10)
C0036221 (UMLS CUI-1)
Item
Chronic eosinophilic leukaemia (CEL) With blastic transformation
integer
C0346421 (UMLS CUI [1])
Code List
Chronic eosinophilic leukaemia (CEL) With blastic transformation
CL Item
no (no)
CL Item
yes (yes )
CL Item
unknown (unknown)
Cytogenetics Data
Item
Include all analysis before treatment; describe results of most recent complete analysis
text
C0010802 (UMLS CUI [1])
CL Item
Not Done or failed (Not Done or failed)
CL Item
Done: normal (Done: normal)
CL Item
Done: abnormal (Done: abnormal)
CL Item
Unknown (Unknown)
Item
If abnormal: Are there 3 or more abnormalities (complex kariotype)?
integer
C0476431 (UMLS CUI [1])
CL Item
no (no)
C1298908 (UMLS CUI-1)
CL Item
yes (yes )
C1705108 (UMLS CUI-1)
CL Item
unknown (unknown)
C0439673 (UMLS CUI-1)
number of metaphases with abnormalites
Item
number of metaphases with abnormalites: If done
integer
C1268813 (UMLS CUI [1])
number of metaphases examined
Item
number of metaphases examined, if done
integer
C1621812 (UMLS CUI [1,1])
C0449788 (UMLS CUI [1,2])
C0449788 (UMLS CUI [1,2])
CL Item
Absent (Absent)
CL Item
Present (Present)
Item
Abnormality chr. 5
integer
C0008625 (UMLS CUI [1,1])
C0008668 (UMLS CUI [1,2])
C0008668 (UMLS CUI [1,2])
CL Item
Absent (Absent)
CL Item
Present (Present)
Item
Abnormality chr. 7
integer
C0008625 (UMLS CUI [1,1])
C0008670 (UMLS CUI [1,2])
C0008670 (UMLS CUI [1,2])
CL Item
Absent (Absent)
CL Item
Present (Present)
CL Item
Absent (Absent)
CL Item
Present (Present)
CL Item
Absent (Absent)
CL Item
Present (Present)
CL Item
Absent (Absent)
CL Item
Present (Present)
CL Item
Absent (Absent)
CL Item
Present (Present)
Other abnormalities
Item
Other abnormalities please specify
integer
C1385713 (UMLS CUI [1])
CL Item
Evaluated: Absent (1)
CL Item
Evaluated: Present (2)
CL Item
Not evaluated (3)
CL Item
unknown (4)
CL Item
Absent (Absent)
CL Item
Present (Present)
CL Item
Not evaluated (Not evaluated)
CL Item
unknown (unknown)
CL Item
Absent (Absent)
CL Item
Present (Present)
CL Item
Not evaluated (Not evaluated)
CL Item
unknown (unknown)
CL Item
Absent (Absent)
CL Item
Present (Present)
CL Item
Not evaluated (Not evaluated)
CL Item
unknown (unknown)
Item
HAEMATOLOGICAL VALUES Peripheral bloodc
integer
C0205488 (UMLS CUI [1])
CL Item
Hb (g/dL) (Hb (g/dL))
C0019046 (UMLS CUI-1)
CL Item
Platelets (109/L) (Platelets (109/L))
C0032181 (UMLS CUI-1)
CL Item
White Blood Cells (109/L) (White Blood Cells (109/L))
C0023508 (UMLS CUI-1)
CL Item
blasts (blasts)
C1982687 (UMLS CUI-1)
CL Item
(4)
CL Item
(5)
CL Item
neutrophils (neutrophils)
C0948762 (UMLS CUI-1)
HbLab
Item
Hb (g/dl)
float
C0019046 (UMLS CUI [1])
Platelets (109/L)
Item
Platelets (109/L)
float
C0032181 (UMLS CUI [1])
White Blood Cells
Item
Peripheral Blood Analysis If evaluated: White Blood Cells (10^9/L)
float
C0005821 (UMLS CUI [1])
Blasts
Item
Blasts
float
C1982687 (UMLS CUI [1])
Monocytes
Item
Monocytes
float
C0026473 (UMLS CUI [1])
neutrophils
Item
Neutrophils
float
C0948762 (UMLS CUI [1])
Bone marrow Blasts
Item
Bone marrow Blasts
integer
C1982687 (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
Low (Low)
C0205251 (UMLS CUI-1)
CL Item
Intermediate (Intermediate)
C0205103 (UMLS CUI-1)
CL Item
High (High)
C0205250 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
CL Item
Cytology (Cytology)
C0010819 (UMLS CUI-1)
CL Item
Histology (Histology)
C0019638 (UMLS CUI-1)
CL Item
Not available (Not available)
C1548671 (UMLS CUI-1)
CL Item
No (No)
CL Item
Mild (Grade 1) (Mild (Grade 1))
CL Item
Moderate (Grade 2) (Moderate (Grade 2))
CL Item
Severe (Grade 3) (Severe (Grade 3))
CL Item
Not evaluable (Not evaluable)
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
C1705108 (UMLS CUI-1)
CL Item
No (No)
C1298908 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
CL Item
Absent (Absent)
CL Item
Present (Present)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
CL Item
Not evaluated (1)
Spleen span in ultrasound or CT scan
Item
Spleen span in ultrasound or CT scan maximum diameter
float
C1278932 (UMLS CUI [1])
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
First Line Therapy
Item
First Line Therapy given
boolean
C1708063 (UMLS CUI [1])
CL Item
MPN (as registered at diagnosis) (1)
C1292778 (UMLS CUI-1)
CL Item
Transformed to myelofibrosis from Polycythaemia vera/ Essential thrombocythemia (2)
C0242006 (UMLS CUI-1)
CL Item
Transformed to AML (3)
date of transformation
Item
date of transformation
date
C1510411 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
C0011008 (UMLS CUI [1,2])
TREATMENT
Item
Chemo/drug/agent
boolean
C0013216 (UMLS CUI [1])
CL Item
Ara-C (Ara-C)
C0010711 (UMLS CUI-1)
CL Item
Androgens (Androgens)
C0002844 (UMLS CUI-1)
CL Item
Tyrosine kinase inhibitor (Tyrosine kinase inhibitor)
C1268567 (UMLS CUI-1)
CL Item
Hydroxyurea (Hydroxyurea)
C0020402 (UMLS CUI-1)
CL Item
AML like therapy (AML like therapy)
C0023467 (UMLS CUI-1)
CL Item
Interferon (Interferon)
C0733470 (UMLS CUI-1)
CL Item
Thalidomide (Thalidomide)
C0039736 (UMLS CUI-1)
CL Item
Lenalidomide (Lenalidomide)
C1144149 (UMLS CUI-1)
CL Item
Steroids (Steroids)
C0038317 (UMLS CUI-1)
Radiotherapy
Item
Radiotherapy
boolean
C1522449 (UMLS CUI [1])
Radiotherapy
Item
if other Radiotherapy, please specify
integer
C1522449 (UMLS CUI [1])
Item
If subsequent HSCT, indicate the date of the 1st CR after this treatment
integer
C4050094 (UMLS CUI [1])
CL Item
Complete remission (CR) (Complete remission(CR))
C0677874 (UMLS CUI-1)
CL Item
Never in CR (Never in CR)
C4050094 (UMLS CUI-1)
Item Group
SUBCLASSIFICATION & STATUS OF DISEASE AT HSCT
Date of HSCT
Item
Date of HSCT
date
C2584899 (UMLS CUI [1])
Item
Splenectomy: if yes date
integer
C0037995 (UMLS CUI [1,1])
C4050094 (UMLS CUI [1,2])
C4050094 (UMLS CUI [1,2])
CL Item
no (no )
C1298908 (UMLS CUI-1)
CL Item
yes (yes)
C1705108 (UMLS CUI-1)
CL Item
No transfusions (1)
C0005841 (UMLS CUI-1)
C3640974 (UMLS CUI-2)
C3640974 (UMLS CUI-2)
CL Item
With transfusions (2)
C0005841 (UMLS CUI-1)
CL Item
Never transfused (3)
C1879316 (UMLS CUI-1)
Item
SUBCLASSIFICATION AT HSCT
integer
C0472699 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
C0008902 (UMLS CUI [1,2])
CL Item
MPN (as registered at diagnosis) (1)
C1292778 (UMLS CUI-1)
CL Item
Transformed to myelofibrosis from Polycythaemia vera/ Essential thrombocythemia (2)
C0242006 (UMLS CUI-1)
CL Item
Transformed to AML (3)
If transformed into Myelofibrosis or AML, date of transformation
Item
If transformed into Myelofibrosis or AML, date of transformation
date
C1510411 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
C0011008 (UMLS CUI [1,2])
Item
STATUS OF DISEASE AT HSCT
integer
C1704632 (UMLS CUI [1,1])
C0472699 (UMLS CUI [1,2])
C0472699 (UMLS CUI [1,2])
CL Item
Primary refractory phase (no change) (1)
CL Item
Complete remission (CR) (2)
CL Item
Improvement but no CR (3)
CL Item
Relapse (after CR) (4)
CL Item
Progression/worse (5)
CL Item
Untreated (Supportive care or treatment without chemotherapy) (6)
Item
NUMBER (complete for CR or relapse)
integer
C1704632 (UMLS CUI [1,1])
C0472699 (UMLS CUI [1,2])
C0237753 (UMLS CUI [1,3])
C0472699 (UMLS CUI [1,2])
C0237753 (UMLS CUI [1,3])
CL Item
1st (1st)
CL Item
2nd (2nd)
CL Item
3rd or higher (3rd or higher)
CL Item
Not done or failed (1)
CL Item
Done: normal (2)
CL Item
Done: abnormal (3)
CL Item
Unknown (4)
Item
If abnormal: Are there 3 or more abnormalities (complex kariotype)?
integer
C1385713 (UMLS CUI [1])
CL Item
no (1)
CL Item
yes (2)
CL Item
unknown (3)
Item
Abnormality chr. 1
integer
C0008625 (UMLS CUI [1,1])
C0008651 (UMLS CUI [1,2])
C0008651 (UMLS CUI [1,2])
CL Item
Absent (1)
CL Item
Present (2)
Abnormality chr. 5
Item
Abnormality chr. 5
float
C0008625 (UMLS CUI [1,1])
C0008668 (UMLS CUI [1,2])
C0008668 (UMLS CUI [1,2])
Item
Abnormality chr. 7
integer
C0008625 (UMLS CUI [1,1])
C0008670 (UMLS CUI [1,2])
C0008670 (UMLS CUI [1,2])
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Platelets (109/L) (1)
CL Item
Hb (g/dl) (2)
CL Item
blasts (3)
CL Item
monocytes (4)
CL Item
neutrophils (5)
CL Item
blasts (1)
CL Item
% blasts (2)
CL Item
Auer rod (3)
CL Item
Low (1)
CL Item
Intermediate (2)
CL Item
High (3)
CL Item
Unknown (4)
CL Item
Low (1)
CL Item
High (2)
CL Item
Unknown (3)
Item
Within 2 months of the preparative -conditoning- regimen:
text
C0005957 (UMLS CUI [1])
CL Item
Cytology (Cytology)
CL Item
Histology (Histology)
CL Item
Not available (Not available)
Item
CELLULARITY ON BM ASPIRATE / BM BIOPSY
integer
C1271729 (UMLS CUI [1])
CL Item
Acellular (1)
CL Item
Hypocellular (2)
CL Item
Normocellular (3)
CL Item
Hypercellular (4)
CL Item
Focal cellularity (5)
CL Item
Unknown (6)
Item
FIBROSIS/OSTEOSCLEROSIS ON BM BIOPSY
integer
C0005954 (UMLS CUI [1,1])
C1512996 (UMLS CUI [1,2])
C1512996 (UMLS CUI [1,2])
CL Item
No (1)
CL Item
Mild (Grade 1) (2)
CL Item
Moderate (Grade 2) (3)
CL Item
Severe (Grade 3) (4)
CL Item
Not evaluable (5)
CL Item
Unknown (6)
Item
Night sweat Within 2 months of the preparative -conditioning- regimen
integer
C0009812 (UMLS CUI [1,1])
C0028081 (UMLS CUI [1,2])
C0028081 (UMLS CUI [1,2])
Code List
Night sweat Within 2 months of the preparative -conditioning- regimen
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
CL Item
Absent (Absent)
CL Item
Present (Present)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
CL Item
yes (1)
CL Item
not evaluated (2)
Physical examination below costal margin
Item
Physical examination below costal margin
float
C0031809 (UMLS CUI [1,1])
C0582240 (UMLS CUI [1,2])
C0582240 (UMLS CUI [1,2])
Spleen span in ultrasound or CT scan
Item
Spleen span in ultrasound or CT scan
float
C0412541 (UMLS CUI [1])
CL Item
yes (1)
CL Item
no (2)
CL Item
unknown (3)
CL Item
No (No)
C1298908 (UMLS CUI-1)
CL Item
Yes (Yes)
C1705108 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
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
C2986560 (UMLS CUI [1])
CL Item
CR (maintained or achieved) (1)
C0677874 (UMLS CUI-1)
CL Item
improvement but no CR (2)
C1272256 (UMLS CUI-1)
CL Item
Unknown (3)
C0439673 (UMLS CUI-1)
CL Item
Relapse / Progression (4)
C0035020 (UMLS CUI-1)
C1704632 (UMLS CUI-2)
C1704632 (UMLS CUI-2)
CL Item
Not evaluable (5)
C1883425 (UMLS CUI-1)
Item
TYPE OF TRANSPLANT
integer
C0559189 (UMLS CUI [1,1])
C0040739 (UMLS CUI [1,2])
C0040739 (UMLS CUI [1,2])
CL Item
AUTOgraft, proceed to Autograft form (1)
C0040736 (UMLS CUI-1)
CL Item
ALLOgraft or Syngeneic graft, proceed to Allograft form (2)
C0040739 (UMLS CUI-1)
CL Item
other (3)
C0205394 (UMLS CUI-1)
TYPE OF TRANSPLANT
Item
if other TYPE OF TRANSPLANT, please specify and contact the EBMT Central Registry Office for instructions
integer
C0559189 (UMLS CUI [1,1])
C0040739 (UMLS CUI [1,2])
C0040739 (UMLS CUI [1,2])