ID

23038

Description

ODM form derived from EBMT MYELOPROLIFERATIVE NEOPLASM please refer to: http://www.ebmt.org/Contents/Data-Management/Registrystructure/MED-ABdatacollectionforms/Pages/MED-AB-data-collection-forms.aspx

Link

http://www.ebmt.org/Contents/Data-Management/Registrystructure/MED-ABdatacollectionforms/Pages/MED-AB-data-collection-forms.aspx

Keywords

  1. 9/27/17 9/27/17 -
  2. 7/17/16 7/17/16 -
  3. 6/20/17 6/20/17 - Martin Dugas
Uploaded on

June 20, 2017

DOI

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License

Creative Commons BY-NC 3.0

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EBMT MYELOPROLIFERATIVE NEOPLASM

General Information

  1. StudyEvent: ODM
    1. General Information
EBMT FORM GENERAL INFORMATION TEAM
Description

EBMT FORM GENERAL INFORMATION TEAM

Alias
UMLS CUI-1
C1508263
UMLS CUI-2
C0005961
EBMT Centre Identification Code (CIC)
Description

EBMT Centre Identification Code

Data type

text

Alias
UMLS CUI [1,1]
C3826859
UMLS CUI [1,2]
C1827636
Hospital
Description

Hospital

Data type

text

Alias
UMLS CUI [1]
C0019994
Unit
Description

Unit

Data type

integer

Alias
UMLS CUI [1]
C1519795
Name of contact person
Description

Contact person

Data type

text

Alias
UMLS CUI [1]
C0337611
Telephone number of contact person
Description

Telephone

Data type

text

Alias
UMLS CUI [1]
C1515258
Fax
Description

Fax

Data type

integer

Alias
UMLS CUI [1]
C0085205
E-mail
Description

E-mail

Data type

integer

Alias
UMLS CUI [1]
C0013849
Date of this report
Description

Date of this report

Data type

date

Alias
UMLS CUI [1]
C1302584
Patient following national / international study / trial
Description

Patient in Trial

Data type

integer

Alias
UMLS CUI [1]
C1997894
Name of study / trial
Description

Name of study / trial

Data type

integer

Alias
UMLS CUI [1]
C0008976
GENERAL INFORMATION Patient
Description

GENERAL INFORMATION Patient

To be entered only if patient previously reported
Description

Unique Identification Code (UIC)

Data type

text

Alias
UMLS CUI [1]
C2348585
Hospital Unique Patient Number or Code
Description

Hospital Unique Patient Number or Code

Data type

text

Alias
UMLS CUI [1]
C1827636
First name(s)_surname(s)
Description

Initials

Data type

text

Alias
UMLS CUI [1]
C2986440
Date of birth
Description

Date of birth

Data type

date

Alias
UMLS CUI [1]
C0421451
Sex:
Description

Sex

Data type

integer

Alias
UMLS CUI [1]
C0079399
ABO Group
Description

ABO Group

Data type

integer

Alias
UMLS CUI [1]
C0000778
Rh factor
Description

Rh factor

Data type

integer

Alias
UMLS CUI [1]
C0035403
DISEASE
Description

DISEASE

Date of Diagnosis
Description

Date of Diagnosis

Data type

date

Alias
UMLS CUI [1]
C2316983
Check the disease for which this transplant was performed
Description

Primary Disease Diagnosis

Data type

text

Alias
UMLS CUI [1]
C0277554
If other diagnosis, specify:
Description

Primary Disease Diagnosis

Data type

text

Alias
UMLS CUI [1,1]
C0277554
UMLS CUI [1,2]
C2348235
SPECIFICATIONS OF THE DISEASE MYELOPROLIFERATIVE NEOPLASM DIAGNOSIS
Description

SPECIFICATIONS OF THE DISEASE MYELOPROLIFERATIVE NEOPLASM DIAGNOSIS

SUBCLASSIFICATION Myeloproliferative neoplasm
Description

SUBCLASSIFICATION

Data type

integer

Alias
UMLS CUI [1,1]
C0027022
UMLS CUI [1,2]
C0008902
Chronic eosinophilic leukaemia (CEL) With blastic transformation
Description

Chronic eosinophilic leukaemia (CEL)

Data type

integer

Alias
UMLS CUI [1]
C0346421
Include all analysis before treatment; describe results of most recent complete analysis
Description

Cytogenetics Data

Data type

text

Alias
UMLS CUI [1]
C0010802
Chromosome analysis
Description

Chromosome analysis

Data type

text

Alias
UMLS CUI [1]
C0200867
If abnormal: Are there 3 or more abnormalities (complex kariotype)?
Description

Chromosome analysis

Data type

integer

Alias
UMLS CUI [1]
C0476431
number of metaphases with abnormalites: If done
Description

number of metaphases with abnormalites

Data type

integer

Alias
UMLS CUI [1]
C1268813
number of metaphases examined, if done
Description

number of metaphases examined

Data type

integer

Alias
UMLS CUI [1,1]
C1621812
UMLS CUI [1,2]
C0449788
Abnormality chr. 1
Description

Abnormality chr. 1

Data type

integer

Alias
UMLS CUI [1]
C0008625
Abnormality chr. 5
Description

Abnormality chr. 5

Data type

integer

Alias
UMLS CUI [1,1]
C0008625
UMLS CUI [1,2]
C0008668
Abnormality chr. 7
Description

Abnormality chr. 7

Data type

integer

Alias
UMLS CUI [1,1]
C0008625
UMLS CUI [1,2]
C0008670
trisomy 8
Description

trisomy 8

Data type

integer

Alias
UMLS CUI [1]
C0432412
trisomy 9
Description

trisomy 9

Data type

integer

Alias
UMLS CUI [1]
C0432411
del 20
Description

del 20

Data type

integer

Alias
UMLS CUI [1]
C1515593
del 13
Description

del 13

Data type

integer

Alias
UMLS CUI [1]
C1515593
Other abnormalities please specify
Description

Other abnormalities

Data type

integer

Alias
UMLS CUI [1]
C1385713
Molecular markers
Description

Molecular markers

Data type

integer

Alias
UMLS CUI [1]
C0005516
JAK2 mutation
Description

JAK2 mutation

Data type

integer

Alias
UMLS CUI [1]
C2827348
BCR/ABL
Description

BCR/ABL

Data type

integer

Alias
UMLS CUI [1]
C0004891
FIP1L1-PDGFR
Description

FIP1L1-PDGFR

Data type

integer

Alias
UMLS CUI [1]
C1432876
HAEMATOLOGICAL VALUES Peripheral bloodc
Description

HAEMATOLOGICAL VALUES Peripheral bloodc

Data type

integer

Alias
UMLS CUI [1]
C0205488
Hb (g/dl)
Description

HbLab

Data type

float

Measurement units
  • g/dl
Alias
UMLS CUI [1]
C0019046
g/dl
Platelets
Description

Platelets

Data type

float

Measurement units
  • 10E9/L
Alias
UMLS CUI [1]
C0032181
10E9/L
Peripheral Blood Analysis If evaluated: White Blood Cells (10^9/L)
Description

White Blood Cells

Data type

float

Measurement units
  • 10^9/L
Alias
UMLS CUI [1]
C0005821
10^9/L
Blasts
Description

Blasts

Data type

float

Measurement units
  • %
Alias
UMLS CUI [1]
C1982687
%
Monocytes
Description

Monocytes

Data type

float

Measurement units
  • %
Alias
UMLS CUI [1]
C0026473
%
Neutrophils
Description

neutrophils

Data type

float

Measurement units
  • %
Alias
UMLS CUI [1]
C0948762
%
Bone marrow Blasts
Description

Bone marrow Blasts

Data type

integer

Measurement units
  • %
Alias
UMLS CUI [1]
C1982687
%
Auer rods present
Description

Auer rods present

Data type

integer

Alias
UMLS CUI [1]
C1332354
Lille score
Description

RISK FACTOR SCORE

Data type

integer

Alias
UMLS CUI [1,1]
C0019187
UMLS CUI [1,2]
C0019187
BM INVESTIGATION (at diagnosis)
Description

BM INVESTIGATION

Data type

integer

Alias
UMLS CUI [1]
C0005953
BM INVESTIGATION RESULTS
Description

FIBROSIS/OSTEOSCLEROSIS ON BM BIOPSY

Data type

integer

Alias
UMLS CUI [1]
C0427694
Night sweat
Description

CONSTITUTIONAL SYMPTOMS

Data type

integer

Alias
UMLS CUI [1]
C0028081
Palpable Splenomegaly
Description

Palpable Splenomegaly

Data type

integer

Alias
UMLS CUI [1]
C0038002
Physical examination
Description

Physical examination

Data type

integer

Alias
UMLS CUI [1]
C0031809
Spleen span in ultrasound or CT scan maximum diameter
Description

Spleen span in ultrasound or CT scan

Data type

float

Measurement units
  • cm
Alias
UMLS CUI [1]
C1278932
cm
Weight loss
Description

Weight loss

Data type

integer

Alias
UMLS CUI [1]
C0043096
FIRST LINE THERAPY
Description

FIRST LINE THERAPY

First Line Therapy given
Description

(If No, proceed to `Subclassification & Status of Disease at HSCT` If Yes, specify start date)

Data type

boolean

Alias
UMLS CUI [1]
C1708063
SUBCLASSIFICATION AT PRIMARY TREATMENT
Description

SUBCLASSIFICATION AT PRIMARY TREATMENT

Data type

integer

date of transformation
Description

If transformed into Myelofibrosis or AML

Data type

date

Alias
UMLS CUI [1,1]
C1510411
UMLS CUI [1,2]
C0011008
Chemo/drug/agent
Description

TREATMENT

Data type

boolean

Alias
UMLS CUI [1]
C0013216
if yes including GF, hormones, etca
Description

Chemo/drug/agent

Data type

integer

Alias
UMLS CUI [1]
C0011008
Radiotherapy
Description

Radiotherapy

Data type

boolean

Alias
UMLS CUI [1]
C1522449
if other Radiotherapy, please specify
Description

Radiotherapy

Data type

integer

Alias
UMLS CUI [1]
C1522449
If subsequent HSCT, indicate the date of the 1st CR after this treatment
Description

* CR must include all three conditions: 1. Resolution of disease –related symptoms and signs including palpable hepato-splenomegaly 2. Hb >11gr/dL, Platelet >100 x109/L and neutrophils >1 x 109/L. 3. normal bone marrow histology, and fibrosis grade no higher than 1

Data type

integer

Alias
UMLS CUI [1]
C4050094
SUBCLASSIFICATION & STATUS OF DISEASE AT HSCT
Description

SUBCLASSIFICATION & STATUS OF DISEASE AT HSCT

Date of HSCT
Description

Date of HSCT

Data type

date

Alias
UMLS CUI [1]
C2584899
Splenectomy: if yes date
Description

Splenectomy

Data type

integer

Alias
UMLS CUI [1,1]
C0037995
UMLS CUI [1,2]
C4050094
Transfusional status at HSCT
Description

Transfusional status at HSCT

Data type

integer

Alias
UMLS CUI [1]
C1879316
SUBCLASSIFICATION AT HSCT
Description

SUBCLASSIFICATION AT HSCT

Data type

integer

Alias
UMLS CUI [1,1]
C0472699
UMLS CUI [1,2]
C0008902
If transformed into Myelofibrosis or AML, date of transformation
Description

If transformed into Myelofibrosis or AML, date of transformation

Data type

date

Alias
UMLS CUI [1,1]
C1510411
UMLS CUI [1,2]
C0011008
STATUS OF DISEASE AT HSCT
Description

STATUS OF DISEASE AT HSCT

Data type

integer

Alias
UMLS CUI [1,1]
C1704632
UMLS CUI [1,2]
C0472699
NUMBER (complete for CR or relapse)
Description

NUMBER OF STATUS OF DISEASE AT HSCT

Data type

integer

Alias
UMLS CUI [1,1]
C1704632
UMLS CUI [1,2]
C0472699
UMLS CUI [1,3]
C0237753
Chromosome analysis
Description

(Within 2 months of the preparative -conditioning- regimen)

Data type

integer

Alias
UMLS CUI [1]
C0200867
If abnormal: Are there 3 or more abnormalities (complex kariotype)?
Description

Chromosome analysis

Data type

integer

Alias
UMLS CUI [1]
C1385713
Abnormality chr. 1
Description

Indicate which abnormalities found

Data type

integer

Alias
UMLS CUI [1,1]
C0008625
UMLS CUI [1,2]
C0008651
Abnormality chr. 5
Description

Indicate which abnormalities found

Data type

float

Alias
UMLS CUI [1,1]
C0008625
UMLS CUI [1,2]
C0008668
Abnormality chr. 7
Description

Indicate which abnormalities found

Data type

integer

Alias
UMLS CUI [1,1]
C0008625
UMLS CUI [1,2]
C0008670
trisomy 8
Description

Indicate which abnormalities found

Data type

integer

Alias
UMLS CUI [1]
C0432412
trisomy 9
Description

Indicate which abnormalities found

Data type

integer

Alias
UMLS CUI [1]
C0432411
del 20
Description

Indicate which abnormalities found

Data type

integer

Alias
UMLS CUI [1]
C1517970
del 13
Description

Indicate which abnormalities found

Data type

integer

Alias
UMLS CUI [1]
C1517957
HAEMATOLOGICAL VALUES Peripheral blood
Description

HAEMATOLOGICAL VALUES

Data type

integer

Alias
UMLS CUI [1]
C0849535
Bone marrow
Description

Bone marrow

Data type

integer

Measurement units
  • %
Alias
UMLS CUI [1]
C0005953
Lille score
Description

Lille score

Data type

integer

Alias
UMLS CUI [1]
C0449821
Cervantes score
Description

Cervantes score

Data type

integer

Alias
UMLS CUI [1]
C0449821
Within 2 months of the preparative -conditoning- regimen:
Description

BM Investigation

Data type

text

Alias
UMLS CUI [1]
C0005957
CELLULARITY ON BM ASPIRATE / BM BIOPSY
Description

(at diagnosis; check one box in each column)

Data type

integer

Alias
UMLS CUI [1]
C1271729
FIBROSIS/OSTEOSCLEROSIS ON BM BIOPSY
Description

FIBROSIS/OSTEOSCLEROSIS ON BM BIOPSY

Data type

integer

Alias
UMLS CUI [1,1]
C0005954
UMLS CUI [1,2]
C1512996
Night sweat Within 2 months of the preparative -conditioning- regimen
Description

CONSTITUTIONAL SYMPTOMS

Data type

integer

Alias
UMLS CUI [1,1]
C0009812
UMLS CUI [1,2]
C0028081
Palpable Splenomegaly
Description

Palpable Splenomegaly

Data type

text

Alias
UMLS CUI [1]
C0038002
Physical examination
Description

Physical examination

Data type

integer

Alias
UMLS CUI [1]
C0031809
Physical examination below costal margin
Description

Physical examination below costal margin

Data type

float

Measurement units
  • cm
Alias
UMLS CUI [1,1]
C0031809
UMLS CUI [1,2]
C0582240
cm
Spleen span in ultrasound or CT scan
Description

Spleen span in ultrasound or CT scan

Data type

float

Measurement units
  • cm
Alias
UMLS CUI [1]
C0412541
cm
Weight loss
Description

Weight loss

Data type

integer

Alias
UMLS CUI [1]
C0043096
ADDITIONAL TREATMENT POST-HSCT
Description

ADDITIONAL TREATMENT POST-HSCT

Additional Disease Treatment
Description

Additional Disease Treatment

Data type

text

Alias
UMLS CUI [1]
C1706712
ADDITIONAL DISEASE TREATMENT, if yes
Description

ADDITIONAL DISEASE TREATMENT

Data type

integer

Alias
UMLS CUI [1]
C1706712
RESPONSE OF DISEASE
Description

RESPONSE OF DISEASE

BEST RESPONSE AT 100 DAYS AFTER HSCT
Description

BEST RESPONSE AT 100 DAYS AFTER HSCT

Data type

integer

Alias
UMLS CUI [1]
C2986560
FORMS TO BE FILLED IN
Description

FORMS TO BE FILLED IN

TYPE OF TRANSPLANT
Description

TYPE OF TRANSPLANT

Data type

integer

Alias
UMLS CUI [1,1]
C0559189
UMLS CUI [1,2]
C0040739
if other TYPE OF TRANSPLANT, please specify and contact the EBMT Central Registry Office for instructions
Description

TYPE OF TRANSPLANT

Data type

integer

Alias
UMLS CUI [1,1]
C0559189
UMLS CUI [1,2]
C0040739

Similar models

General Information

  1. StudyEvent: ODM
    1. General Information
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
EBMT FORM GENERAL INFORMATION TEAM
C1508263 (UMLS CUI-1)
C0005961 (UMLS CUI-2)
EBMT Centre Identification Code
Item
EBMT Centre Identification Code (CIC)
text
C3826859 (UMLS CUI [1,1])
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])
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
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])
Item Group
GENERAL INFORMATION Patient
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:
integer
C0079399 (UMLS CUI [1])
Code List
Sex:
CL Item
Male (1)
C0086582 (UMLS CUI-1)
CL Item
Female (2)
C0015780 (UMLS CUI-1)
ABO Group
Item
ABO Group
integer
C0000778 (UMLS CUI [1])
Item
Rh factor
integer
C0035403 (UMLS CUI [1])
Code List
Rh factor
CL Item
Absent (1)
C0332197 (UMLS CUI-1)
CL Item
Present (2)
C0150312 (UMLS CUI-1)
CL Item
Not evaluated (3)
C3846720 (UMLS CUI-1)
Item Group
DISEASE
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)
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])
Item Group
SPECIFICATIONS OF THE DISEASE MYELOPROLIFERATIVE NEOPLASM DIAGNOSIS
Item
SUBCLASSIFICATION Myeloproliferative neoplasm
integer
C0027022 (UMLS CUI [1,1])
C0008902 (UMLS CUI [1,2])
Code List
SUBCLASSIFICATION Myeloproliferative neoplasm
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])
Item
Chromosome analysis
text
C0200867 (UMLS CUI [1])
Code List
Chromosome analysis
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])
Code List
If abnormal: Are there 3 or more abnormalities (complex kariotype)?
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])
Item
Abnormality chr. 1
integer
C0008625 (UMLS CUI [1])
Code List
Abnormality chr. 1
CL Item
Absent (Absent)
CL Item
Present (Present)
Item
Abnormality chr. 5
integer
C0008625 (UMLS CUI [1,1])
C0008668 (UMLS CUI [1,2])
Code List
Abnormality chr. 5
CL Item
Absent (Absent)
CL Item
Present (Present)
Item
Abnormality chr. 7
integer
C0008625 (UMLS CUI [1,1])
C0008670 (UMLS CUI [1,2])
Code List
Abnormality chr. 7
CL Item
Absent (Absent)
CL Item
Present (Present)
Item
trisomy 8
integer
C0432412 (UMLS CUI [1])
Code List
trisomy 8
CL Item
Absent (Absent)
CL Item
Present (Present)
Item
trisomy 9
integer
C0432411 (UMLS CUI [1])
Code List
trisomy 9
CL Item
Absent (Absent)
CL Item
Present (Present)
Item
del 20
integer
C1515593 (UMLS CUI [1])
Code List
del 20
CL Item
Absent (Absent)
CL Item
Present (Present)
Item
del 13
integer
C1515593 (UMLS CUI [1])
Code List
del 13
CL Item
Absent (Absent)
CL Item
Present (Present)
Other abnormalities
Item
Other abnormalities please specify
integer
C1385713 (UMLS CUI [1])
Item
Molecular markers
integer
C0005516 (UMLS CUI [1])
Code List
Molecular markers
CL Item
Evaluated: Absent  (1)
CL Item
Evaluated: Present (2)
CL Item
Not evaluated (3)
CL Item
unknown (4)
Item
JAK2 mutation
integer
C2827348 (UMLS CUI [1])
Code List
JAK2 mutation
CL Item
Absent (Absent)
CL Item
Present (Present)
CL Item
Not evaluated (Not evaluated)
CL Item
unknown (unknown)
Item
BCR/ABL
integer
C0004891 (UMLS CUI [1])
Code List
BCR/ABL
CL Item
Absent (Absent)
CL Item
Present (Present)
CL Item
Not evaluated (Not evaluated)
CL Item
unknown (unknown)
Item
FIP1L1-PDGFR
integer
C1432876 (UMLS CUI [1])
Code List
FIP1L1-PDGFR
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])
Code List
HAEMATOLOGICAL VALUES Peripheral bloodc
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
Item
Platelets
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])
Item
Auer rods present
integer
C1332354 (UMLS CUI [1])
Code List
Auer rods present
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)
Item
Lille score
integer
C0019187 (UMLS CUI [1,1])
C0019187 (UMLS CUI [1,2])
Code List
Lille score
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)
Item
BM INVESTIGATION (at diagnosis)
integer
C0005953 (UMLS CUI [1])
Code List
BM INVESTIGATION (at diagnosis)
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)
Item
BM INVESTIGATION RESULTS
integer
C0427694 (UMLS CUI [1])
Code List
BM INVESTIGATION RESULTS
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)
Item
Night sweat
integer
C0028081 (UMLS CUI [1])
Code List
Night sweat
CL Item
Yes (Yes)
C1705108 (UMLS CUI-1)
CL Item
No (No)
C1298908 (UMLS CUI-1)
CL Item
Unknown (Unknown)
C0439673 (UMLS CUI-1)
Item
Palpable Splenomegaly
integer
C0038002 (UMLS CUI [1])
Code List
Palpable Splenomegaly
CL Item
Absent  (1)
C0332197 (UMLS CUI-1)
CL Item
Present  (2)
C0150312 (UMLS CUI-1)
CL Item
Not evaluated  (3)
C3846720 (UMLS CUI-1)
CL Item
Unknown (4)
C0439673 (UMLS CUI-1)
Item
Physical examination
integer
C0031809 (UMLS CUI [1])
Code List
Physical examination
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])
Item
Weight loss
integer
C0043096 (UMLS CUI [1])
Code List
Weight loss
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
Item Group
FIRST LINE THERAPY
First Line Therapy
Item
First Line Therapy given
boolean
C1708063 (UMLS CUI [1])
Item
SUBCLASSIFICATION AT PRIMARY TREATMENT
integer
Code List
SUBCLASSIFICATION AT PRIMARY TREATMENT
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])
TREATMENT
Item
Chemo/drug/agent
boolean
C0013216 (UMLS CUI [1])
Item
if yes including GF, hormones, etca
integer
C0011008 (UMLS CUI [1])
Code List
if yes including GF, hormones, etca
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])
Code List
If subsequent HSCT, indicate the date of the 1st CR after this treatment
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])
Code List
Splenectomy: if yes date
CL Item
no  (no )
C1298908 (UMLS CUI-1)
CL Item
yes (yes)
C1705108 (UMLS CUI-1)
Item
Transfusional status at HSCT
integer
C1879316 (UMLS CUI [1])
Code List
Transfusional status at HSCT
CL Item
No transfusions (1)
C0005841 (UMLS CUI-1)
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])
Code List
SUBCLASSIFICATION AT HSCT
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])
Item
STATUS OF DISEASE AT HSCT
integer
C1704632 (UMLS CUI [1,1])
C0472699 (UMLS CUI [1,2])
Code List
STATUS OF DISEASE AT HSCT
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])
Code List
NUMBER (complete for CR or relapse)
CL Item
1st (1st)
CL Item
2nd (2nd)
CL Item
3rd or higher (3rd or higher)
Item
Chromosome analysis
integer
C0200867 (UMLS CUI [1])
Code List
Chromosome analysis
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])
Code List
If abnormal: Are there 3 or more abnormalities (complex kariotype)?
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])
Code List
Abnormality chr. 1
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])
Item
Abnormality chr. 7
integer
C0008625 (UMLS CUI [1,1])
C0008670 (UMLS CUI [1,2])
Code List
Abnormality chr. 7
CL Item
Absent (1)
CL Item
Present (2)
Item
trisomy 8
integer
C0432412 (UMLS CUI [1])
Code List
trisomy 8
CL Item
Absent (1)
CL Item
Present (2)
Item
trisomy 9
integer
C0432411 (UMLS CUI [1])
Code List
trisomy 9
CL Item
Absent (1)
CL Item
Present (2)
Item
del 20
integer
C1517970 (UMLS CUI [1])
Code List
del 20
CL Item
Absent (1)
CL Item
Present (2)
Item
del 13
integer
C1517957 (UMLS CUI [1])
Code List
del 13
CL Item
Absent (1)
CL Item
Present (2)
Item
HAEMATOLOGICAL VALUES Peripheral blood
integer
C0849535 (UMLS CUI [1])
Code List
HAEMATOLOGICAL VALUES Peripheral blood
CL Item
Platelets (109/L)  (1)
CL Item
Hb (g/dl) (2)
CL Item
blasts  (3)
CL Item
monocytes (4)
CL Item
neutrophils (5)
Item
Bone marrow
integer
C0005953 (UMLS CUI [1])
Code List
Bone marrow
CL Item
blasts (1)
CL Item
% blasts (2)
CL Item
Auer rod (3)
Item
Lille score
integer
C0449821 (UMLS CUI [1])
Code List
Lille score
CL Item
Low (1)
CL Item
Intermediate (2)
CL Item
High (3)
CL Item
Unknown (4)
Item
Cervantes score
integer
C0449821 (UMLS CUI [1])
Code List
Cervantes score
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])
Code List
Within 2 months of the preparative -conditoning- regimen:
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])
Code List
CELLULARITY ON BM ASPIRATE / BM BIOPSY
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])
Code List
FIBROSIS/OSTEOSCLEROSIS ON BM BIOPSY
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])
Code List
Night sweat Within 2 months of the preparative -conditioning- regimen
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
Palpable Splenomegaly
text
C0038002 (UMLS CUI [1])
Code List
Palpable Splenomegaly
CL Item
Absent  (Absent)
CL Item
Present  (Present)
CL Item
Not evaluated  (Not evaluated)
CL Item
Unknown (Unknown)
Item
Physical examination
integer
C0031809 (UMLS CUI [1])
Code List
Physical examination
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])
Spleen span in ultrasound or CT scan
Item
Spleen span in ultrasound or CT scan
float
C0412541 (UMLS CUI [1])
Item
Weight loss
integer
C0043096 (UMLS CUI [1])
Code List
Weight loss
CL Item
yes (1)
CL Item
no (2)
CL Item
unknown (3)
Item Group
ADDITIONAL TREATMENT POST-HSCT
Item
Additional Disease Treatment
text
C1706712 (UMLS CUI [1])
Code List
Additional Disease Treatment
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])
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 Group
RESPONSE OF DISEASE
Item
BEST RESPONSE AT 100 DAYS AFTER HSCT
integer
C2986560 (UMLS CUI [1])
Code List
BEST RESPONSE AT 100 DAYS AFTER HSCT
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)
CL Item
Not evaluable (5)
C1883425 (UMLS CUI-1)
Item Group
FORMS TO BE FILLED IN
Item
TYPE OF TRANSPLANT
integer
C0559189 (UMLS CUI [1,1])
C0040739 (UMLS CUI [1,2])
Code List
TYPE OF TRANSPLANT
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])

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