ID

13685

Description

ODM derived from HSCT forms on http://www.ebmt.org/

Link

http://www.ebmt.org/

Keywords

Versions (2)
  1. 2/9/16 2/9/16 -
  2. 2/28/16 2/28/16 -
Uploaded on

February 28, 2016

DOI

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License

Creative Commons BY-NC 3.0
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Specification of the disease EBMT MDS

English

Specification of the disease

1 forms  
Initial Diagnosis
Description

Initial Diagnosis

Alias
UMLS CUI-1
C0011900
Myelodysplastic Syndrome (WHO)-Subclassification (Please use the WHO subclassification if possible)
Description

WHO-Subclassification

Data type

text

Alias
UMLS CUI [1,1]
C3463824
UMLS CUI [1,2]
C0043237
Myelodysplastic Syndrome (FAB)-Subclassification
Description

Myelodysplastic Syndrome (FAB)-Subclassification

Data type

text

Alias
UMLS CUI [1,1]
C3463824
UMLS CUI [1,2]
C2984084
Myelodysplastic/ Myeloproliferative Neoplasm Specification
Description

Myelodysplastic/ Myeloproliferative Neoplasm

Data type

text

Alias
UMLS CUI [1,1]
C1301355
UMLS CUI [1,2]
C0006826
Secondary Acute Leukaemia Related to prior treatment and not after a previous diagnosis of MDS or MPS).
Description

Secondary Acute Leukaemia

Data type

text

Alias
UMLS CUI [1]
C0280449
Secondary Origin of Disease If yes, specify cause If yes, specify primary disease
Description

Secondary Origin

Data type

text

Alias
UMLS CUI [1]
C0277555
Secondary Origin If yes, specify cause
Description

Secondary Origin - Cause

Data type

text

Alias
UMLS CUI [1,1]
C0277555
UMLS CUI [1,2]
C0015127
Secondary Origin If yes, specify cause If cause other, specify
Description

Secondary Origin - cause

Data type

text

Alias
UMLS CUI [1,1]
C0277555
UMLS CUI [1,2]
C0015127
Secondary origin If yes, specify Primary Disease Date of diagnosis of Primary Disease
Description

Date of diagnosis of Primary Disease

Data type

date

Alias
UMLS CUI [1,1]
C0277555
UMLS CUI [1,2]
C0277554
UMLS CUI [1,3]
C2316983
Secondary Origin If yes, specify Primary Disease If other, Specify
Description

Speciification of primary disease

Data type

text

Alias
UMLS CUI [1,1]
C0277555
UMLS CUI [1,2]
C0277554
Secondary Origin If yes, specify Primary Disease If other, specify
Description

Specification of other primary disease

Data type

text

Alias
UMLS CUI [1,1]
C0277554
UMLS CUI [1,2]
C2348235
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

Cytogenetics data - Chromosome analysis

Data type

text

Alias
UMLS CUI [1]
C0200867
Chromosome analysis If abnormal: are there 3 or more abnormalities (complex kariotype)=
Description

Cytogenetics data - complex kariotype

Data type

text

Alias
UMLS CUI [1]
C3273253
Chromosome analysis If done: number of metaphases with abnormalities
Description

Cytogenetics data - abnormal metaphases

Data type

text

Alias
UMLS CUI [1]
C0025564
Chromosome analysis If done: number of metaphases examined
Description

Cytogenetics data - examined metaphases

Data type

text

Alias
UMLS CUI [1,1]
C0025564
UMLS CUI [1,2]
C0260877
Chromosome Analysis
Description

Chromosome Analysis

Alias
UMLS CUI-1
C0200867
Indicate which abnormalities found:
Description

Specification

Data type

text

Alias
UMLS CUI [1,1]
C0200867
UMLS CUI [1,2]
C2348235
Indicate which abnormalities found:
Description

Chromosomal abnormality

Data type

text

Alias
UMLS CUI [1]
C0200867
Indicate which abnormalities foud: If other, specify
Description

Specification - other

Data type

text

Alias
UMLS CUI [1,1]
C0200867
UMLS CUI [1,2]
C2348235
Haematological values (at diagnosis)
Description

Haematological values (at diagnosis)

Alias
UMLS CUI-1
C0018941
Peripheral blood analysis
Description

Peripheral blood

Data type

text

Alias
UMLS CUI [1]
C0005834
Peripheral Blood Analysis If evaluated: Hb (g/dL)
Description

Hb

Data type

float

Measurement units
  • g/dL
Alias
UMLS CUI [1]
C0518015
g/dL
Peripheral Blood Analysis If evaluated: Platelets (10^9/L)
Description

Platelets

Data type

float

Measurement units
  • 10^9/L
Alias
UMLS CUI [1]
C0005821
10^9/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]
C0023508
10^9/L
Peripheral Blood Analysis If evaluated: % blasts
Description

blasts

Data type

float

Measurement units
  • %
Alias
UMLS CUI [1]
C0523113
%
Peripheral Blood Analysis If evaluated: % monocytes
Description

monocytes

Data type

float

Measurement units
  • %
Alias
UMLS CUI [1]
C0200637
%
Peripheral Blood Analysis If evaluated: % neutrophils
Description

neutrophils

Data type

float

Measurement units
  • %
Alias
UMLS CUI [1]
C0027950
%
Bone marrow analysis
Description

Bone marrow

Data type

text

Alias
UMLS CUI [1]
C0005953
Bone marrow analysis: If evaluated: % blasts
Description

blasts

Data type

float

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

Auer rods

Data type

text

Alias
UMLS CUI [1]
C2698200
Fill only for MDS and CMML; do not fill for treatment related secondary Acute leukaemia, or jMML)
Description

IPSS score

Data type

text

Alias
UMLS CUI [1]
C2827405
BM Investigation
Description

BM Investigation

Data type

text

Alias
UMLS CUI [1]
C0005957
Results (at diagnosis; check one in each column) Cellularity on BM Aspirate/ BM biopsy
Description

Cellularity

Data type

text

Alias
UMLS CUI [1]
C1561532
Results (at diagnosis; check one in each column) Fibrosis on BM biopsy
Description

Fibrosis

Data type

text

Alias
UMLS CUI [1]
C2355575
First Line Therapy
Description

First Line Therapy

Alias
UMLS CUI-1
C1708063
First Line Therapy given (If No, proceed to "Subclassification & Status of Disease at HSCT" If Yes, specify start date)
Description

First Line Therapy

Data type

boolean

Alias
UMLS CUI [1]
C1708063
Start Date of First Line Therapy
Description

Start Date

Data type

date

Alias
UMLS CUI [1]
C0808070
Myelodysplastic Syndrome (WHO)-Subclassification (Please use the WHO subclassification if possible) (If patient had Secondary Acute Leukaemia related to prior treatment, skip this Subclassification section and proceed to Treatment section)
Description

(WHO)Subclassification at primary treatment

Data type

text

Alias
UMLS CUI [1,1]
C3463824
UMLS CUI [1,2]
C0043237
Myelodysplastic Syndrome (FAB)-Subclassification
Description

(FAB)Subclassification at primary treatment

Data type

text

Alias
UMLS CUI [1,1]
C3463824
UMLS CUI [1,2]
C2984084
Myelodysplastic/ Myeloproliferative Neoplasm Specification
Description

Myelodysplastic/ Myeloproliferative Neoplasm at primary treatment

Data type

text

Alias
UMLS CUI [1,1]
C1301355
UMLS CUI [1,2]
C0006826
If transformed into Secondary Acute Leukaemia, specify date of transformation
Description

Secondary Acute Leukaemia

Data type

date

Alias
UMLS CUI [1]
C0280449
Chemo/drug/agent
Description

Pharmacotherapy

Data type

boolean

Alias
UMLS CUI [1]
C0013216
If yes, specify
Description

Specification pharmacotherapy

Data type

text

Alias
UMLS CUI [1,1]
C0013216
UMLS CUI [1,2]
C2348235
If other, specify
Description

Specification Pharmacotherapy

Data type

text

Alias
UMLS CUI [1,1]
C0013216
UMLS CUI [1,2]
C2348235
Response to treatment
Description

Response to treatment

Data type

text

Alias
UMLS CUI [1]
C0521982
If complete remission, date of first CR (If subsequent HSCT, indicate the date of the 1st CR after this treatment)
Description

Date of first complete remission

Data type

date

Alias
UMLS CUI [1,1]
C0011008
UMLS CUI [1,2]
C0677874
Subclassification & Status of Disease at HSCT (to be evaluated just before starting conditioning)
Description

Subclassification & Status of Disease at HSCT (to be evaluated just before starting conditioning)

Alias
UMLS CUI-1
C0008902
UMLS CUI-3
C0699749
Date of HSCT
Description

Date of HSCT

Data type

date

Alias
UMLS CUI [1]
C2584899
jMML only: fill in splenectomy details
Description

Splenectomy

Data type

boolean

Alias
UMLS CUI [1]
C0037995
jMML only: fill in splenectomy details if yes, date of splenectomy
Description

Date of Splenectomy

Data type

date

Alias
UMLS CUI [1]
C2584899
Transfusion of red blood cells
Description

Red blood cells transfusion

Data type

text

Alias
UMLS CUI [1]
C0086252
Transfusion of red blood cells If yes, specify the amount
Description

Amount

Data type

text

Alias
UMLS CUI [1,1]
C0086252
UMLS CUI [1,2]
C1265611
Transfusion of platelets
Description

Platelet transfusion

Data type

text

Alias
UMLS CUI [1]
C0086818
Myelodysplastic Syndrome (WHO)-Subclassification (Please use the WHO subclassification if possible) (if patient had Secondary Acute Leukaemia related to prior treatment, skip this section and proceed to "Disease status at HSCT")
Description

(WHO)Subclassification at HSCT

Data type

text

Alias
UMLS CUI [1,1]
C3463824
UMLS CUI [1,2]
C0043237
Myelodysplastic Syndrome (FAB)-Subclassification
Description

(FAB)Subclassification at HSCT

Data type

text

Alias
UMLS CUI [1,1]
C3463824
UMLS CUI [1,2]
C2984084
Myelodysplastic/ Myeloproliferative Neoplasm Specification
Description

Myelodysplastic/ Myeloproliferative Neoplasm at HSCT

Data type

text

Alias
UMLS CUI [1,1]
C1301355
UMLS CUI [1,2]
C0006826
If transformed into Secondary Acute Leukaemia, specify date of transformation
Description

Secondary Acute Leukaemia

Data type

date

Alias
UMLS CUI [1]
C0280449
Disease Status at HSCT
Description

Disease Status at HSCT

Treated with intention to achieve remission: (For all diagnosis except jMML (see below for jMML))
Description

Disease status at HSCT

Data type

text

Alias
UMLS CUI [1]
C0699749
If CR or relapse, specify number:
Description

Number of CR or relapse

Data type

text

Alias
UMLS CUI [1,1]
C0677874
UMLS CUI [1,2]
C0237753
UMLS CUI [2,1]
C0277556
UMLS CUI [2,2]
C0237753
For jMML only:
Description

Disease Status at HSCT (jMML)

Data type

text

Alias
UMLS CUI [1,1]
C0699749
UMLS CUI [1,2]
C0349639
Cytogenetics Data (Within 2 months of the preparative -conditioning- regimen)
Description

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

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 - complex kariotype

Data type

text

Alias
UMLS CUI [1]
C3273253
Indicate which abnormalties found:
Description

Specification

Data type

text

Alias
UMLS CUI [1,1]
C0200867
UMLS CUI [1,2]
C2348235
Indicate which abnormalities found:
Description

Chromosomal abnormality

Data type

text

Alias
UMLS CUI [1]
C0200867
If other, specify:
Description

Specification - other

Data type

text

Alias
UMLS CUI [1,1]
C0200867
UMLS CUI [1,2]
C2348235
Haematological values at HSCT (to be evaluated just before starting the preparative -conditioning- regimen)
Description

Haematological values at HSCT (to be evaluated just before starting the preparative -conditioning- regimen)

Peripheral blood analysis
Description

Peripheral blood

Data type

text

Alias
UMLS CUI [1]
C0005834
Peripheral Blood Analysis If evaluated: Hb (g/dL)
Description

Hb

Data type

float

Measurement units
  • g/dL
Alias
UMLS CUI [1]
C0518015
g/dL
Peripheral Blood Analysis If evaluated: Platelets (10^9/L)
Description

Platelets

Data type

float

Measurement units
  • 10^9/L
Alias
UMLS CUI [1]
C0005821
10^9/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
Peripheral blood analysis If evaluated: % blasts
Description

blasts

Data type

float

Measurement units
  • %
Alias
UMLS CUI [1]
C0523113
%
Peripheral blood analysis: If evaluated: % monocytes
Description

monocytes

Data type

float

Measurement units
  • %
Alias
UMLS CUI [1]
C0200637
%
Peripheral blood analysis: If evaluated: % neutrophils
Description

neutrophils

Data type

float

Measurement units
  • %
Alias
UMLS CUI [1]
C0027950
%
Bone marrow analysis
Description

Bone Marrow

Data type

text

Alias
UMLS CUI [1]
C0005953
Bone marrow analysis: If evaluated: % blasts
Description

blasts

Data type

float

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

Auer rods

Data type

text

Alias
UMLS CUI [1]
C2698200
Fill only for MDS and CMML:
Description

IPSS Score

Data type

text

Alias
UMLS CUI [1]
C2827405
Within 2 months of the preparative -conditoning- regimen:
Description

BM Investigation

Data type

text

Alias
UMLS CUI [1]
C0005957
Results (at diagnosis; check one in each column) Cellularity on BM Aspirate/ BM biopsy
Description

Cellularity

Data type

text

Alias
UMLS CUI [1]
C1561532
Results (at diagnosis; check one in each column) Fibrosis on BM biopsy
Description

Fibrosis

Data type

text

Alias
UMLS CUI [1]
C2355575
Additional Treatment Post-HSCT
Description

Additional Treatment Post-HSCT

Additional Treatment Post-HSCT
Description

Additional Treatment Post-HSCT

Data type

text

Alias
UMLS CUI [1]
C1706712
If yes, planned or not planned
Description

Planned Additional Treatment Post-HSCT

Data type

text

Alias
UMLS CUI [1,1]
C1706712
UMLS CUI [1,2]
C1301732
If yes, specify start date:
Description

Start date of additional treatment Post-HSCT

Data type

date

Alias
UMLS CUI [1,1]
C1706712
UMLS CUI [1,2]
C0808070
If yes: Chemo/ drug/agent therapy (including MoAB, etc.)
Description

Additional Treatment: Pharmacotherapy

Data type

text

Alias
UMLS CUI [1,1]
C1706712
UMLS CUI [1,2]
C0013216
If additional chemo/drug/agent treatment, specify:
Description

Pharmacotherapy Specification

Data type

text

Alias
UMLS CUI [1,1]
C0013216
UMLS CUI [1,2]
C2348235
If yes: Other treatment
Description

Other Additional Treatment Post-HSCT

Data type

text

Alias
UMLS CUI [1]
C1706712
If other treatment, specify:
Description

Other Additional Treatment Post-HSCT - Specification

Data type

text

Alias
UMLS CUI [1,1]
C1706712
UMLS CUI [1,2]
C2348235
Best Disease Response at 100 days post-HSCT
Description

Best Disease Response at 100 days post-HSCT

Best Disease Response at 100 days post-HSCT
Description

Best Disease Response at 100 days post-HSCT

Data type

text

Alias
UMLS CUI [1]
C1704632
Forms to be filled in
Description

Forms to be filled in

Type of HSCT (Check all that apply):
Description

Type of HSCT

Data type

text

Alias
UMLS CUI [1]
C0472699
If other, specify, and contact the EBMT Central Registry Office for instructions
Description

Other Type of HSCT

Data type

text

Alias
UMLS CUI [1]
C0472699
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Similar models

Specification of the disease

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Initial Diagnosis
C0011900 (UMLS CUI-1)
Item
Myelodysplastic Syndrome (WHO)-Subclassification (Please use the WHO subclassification if possible)
text
C3463824 (UMLS CUI [1,1])
C0043237 (UMLS CUI [1,2])
Myelodysplastic Syndrome
Code List
Myelodysplastic Syndrome (WHO)-Subclassification (Please use the WHO subclassification if possible)
CL Item
Refractory Anaemia (without ring sideroblasts) RA (Refractory Anaemia (without ring sideroblasts) RA)
CL Item
RA with ring sideroblasts (RARS) (RA with ring sideroblasts (RARS))
CL Item
MDS associated with isolated del(5q) (MDS associated with isolated del(5q))
CL Item
Refractory cytopenia with multilineage dysplasia (RCMD) (Refractory cytopenia with multilineage dysplasia (RCMD))
CL Item
Refractory cytopenia with multilineage dysplasia and ringed sideroblasts (RCMD-RS) (Refractory cytopenia with multilineage dysplasia and ringed sideroblasts (RCMD-RS))
CL Item
RA with excess of blasts (RAEB-1) (RA with excess of blasts (RAEB-1))
CL Item
RA with excess of blasts (RAEB-2) (RA with excess of blasts (RAEB-2))
CL Item
Childhood myelodysplastic syndrome (Refractory cytopenia of childhood (RCC)) (Childhood myelodysplastic syndrome (Refractory cytopenia of childhood (RCC)))
CL Item
Unclassified (MDS-U) (Unclassified (MDS-U))
Item
Myelodysplastic Syndrome (FAB)-Subclassification
text
C3463824 (UMLS CUI [1,1])
C2984084 (UMLS CUI [1,2])
Myelodysplastic Syndrome
Code List
Myelodysplastic Syndrome (FAB)-Subclassification
CL Item
RA without ring siderboblasts (RA) (RA without ring siderboblasts (RA))
CL Item
RA with ring siderodblasts (RARS) (RA with ring siderodblasts (RARS))
CL Item
RA with excess of blasts (RAEB) (RA with excess of blasts (RAEB))
CL Item
RAEB in transformation (RAEB-t) (RAEB in transformation (RAEB-t))
CL Item
Unclassified (Unclassified)
Item
Myelodysplastic/ Myeloproliferative Neoplasm Specification
text
C1301355 (UMLS CUI [1,1])
C0006826 (UMLS CUI [1,2])
Myelodysplastic/ Myeloproliferative Neoplasm
Code List
Myelodysplastic/ Myeloproliferative Neoplasm Specification
CL Item
Chronic Myelomonocytic Leukaemia (CMMoL, CMML) (Chronic Myelomonocytic Leukaemia (CMMoL, CMML))
CL Item
Type I (Type I)
CL Item
Type II (Type II)
CL Item
Juvenile Myelomonocytic Leukaemia (JCMMoL, JMML, JCML, JCMML) (Juvenile Myelomonocytic Leukaemia (JCMMoL, JMML, JCML, JCMML))
CL Item
Atpyical Chronic Myeloid Leukaemia (Atypical CML, t(9;22)negative and BCR/ABL negative) (Atpyical Chronic Myeloid Leukaemia (Atypical CML, t(9;22)negative and BCR/ABL negative))
Item
Secondary Acute Leukaemia Related to prior treatment and not after a previous diagnosis of MDS or MPS).
text
C0280449 (UMLS CUI [1])
Secondary Acute Leukaemia
Code List
Secondary Acute Leukaemia Related to prior treatment and not after a previous diagnosis of MDS or MPS).
CL Item
Acute Myelogenous Leukaemia (AML) (ProMiSe users: Please use code 1 for main diagnosis) (Acute Myelogenous Leukaemia (AML) (ProMiSe users: Please use code 1 for main diagnosis))
Item
Secondary Origin of Disease If yes, specify cause If yes, specify primary disease
text
C0277555 (UMLS CUI [1])
Secondary Origin
Code List
Secondary Origin of Disease If yes, specify cause If yes, specify primary disease
CL Item
No (No)
CL Item
Yes (If Secondary Acute Leukaemia, it must always be Yes) (Yes (If Secondary Acute Leukaemia, it must always be Yes))
CL Item
Unknown (Unknown)
Item
Secondary Origin If yes, specify cause
text
C0277555 (UMLS CUI [1,1])
C0015127 (UMLS CUI [1,2])
Secondary Origin - Cause
Code List
Secondary Origin If yes, specify cause
CL Item
Chemoth./ Radiationth. treated disease (tick all that apply): (Chemoth./ Radiationth. treated disease (tick all that apply):)
CL Item
Alkylating agent/radiation-related (Alkylating agent/radiation-related)
CL Item
Topoisomerase II inhibitor-related (Topoisomerase II inhibitor-related)
CL Item
Radiation (Radiation)
CL Item
Unknown (Unknown)
CL Item
Immune suppression (Immune suppression)
CL Item
After stem cell HSCT (After stem cell HSCT)
CL Item
Other (Other)
CL Item
Unknown (Unknown)
Secondary Origin - cause
Item
Secondary Origin If yes, specify cause If cause other, specify
text
C0277555 (UMLS CUI [1,1])
C0015127 (UMLS CUI [1,2])
Date of diagnosis of Primary Disease
Item
Secondary origin If yes, specify Primary Disease Date of diagnosis of Primary Disease
date
C0277555 (UMLS CUI [1,1])
C0277554 (UMLS CUI [1,2])
C2316983 (UMLS CUI [1,3])
Item
Secondary Origin If yes, specify Primary Disease If other, Specify
text
C0277555 (UMLS CUI [1,1])
C0277554 (UMLS CUI [1,2])
Secondary Origin - Primary Disease
Code List
Secondary Origin If yes, specify Primary Disease If other, Specify
CL Item
AML (AML)
CL Item
ALL (ALL)
CL Item
CML (CML)
CL Item
Other chronic leukaemia (Other chronic leukaemia)
CL Item
NHL (NHL)
CL Item
Hodgkin's disease (Hodgkin's disease)
CL Item
Multiple myeloma (Multiple myeloma)
CL Item
Other plasma cell disorder (Other plasma cell disorder)
CL Item
Solid tumour (Solid tumour)
CL Item
Aplastic anamia (Aplastic anamia)
CL Item
PNH (PNH)
CL Item
Inherited disorder (Inherited disorder)
CL Item
Autoimmune (Autoimmune)
CL Item
Other (Other)
CL Item
unknown (unknown)
Specification of other primary disease
Item
Secondary Origin If yes, specify Primary Disease If other, specify
text
C0277554 (UMLS CUI [1,1])
C2348235 (UMLS CUI [1,2])
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])
Cytogenetics data - Chromosome analysis
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
Chromosome analysis If abnormal: are there 3 or more abnormalities (complex kariotype)=
text
C3273253 (UMLS CUI [1])
Cytogenetics data - Chromosome analysis
Code List
Chromosome analysis If abnormal: are there 3 or more abnormalities (complex kariotype)=
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
unknown (unknown)
Cytogenetics data - abnormal metaphases
Item
Chromosome analysis If done: number of metaphases with abnormalities
text
C0025564 (UMLS CUI [1])
Cytogenetics data - examined metaphases
Item
Chromosome analysis If done: number of metaphases examined
text
C0025564 (UMLS CUI [1,1])
C0260877 (UMLS CUI [1,2])
Item Group
Chromosome Analysis
C0200867 (UMLS CUI-1)
Item
Indicate which abnormalities found:
text
C0200867 (UMLS CUI [1,1])
C2348235 (UMLS CUI [1,2])
Chromosome Analysis
Code List
Indicate which abnormalities found:
CL Item
del Y (-Y) (del Y (-Y))
CL Item
del 5q (5q-) (del 5q (5q-))
CL Item
Other abn 5 (Other abn 5)
CL Item
del 20q (20q-) (del 20q (20q-))
CL Item
del 7q (7q-) (del 7q (7q-))
CL Item
Other abn 7 (Other abn 7)
CL Item
Other abnormalities (Other abnormalities)
Item
Indicate which abnormalities found:
text
C0200867 (UMLS CUI [1])
Chromosome Analysis
Code List
Indicate which abnormalities found:
CL Item
Absent (Absent)
CL Item
Present (Present)
Specification - other
Item
Indicate which abnormalities foud: If other, specify
text
C0200867 (UMLS CUI [1,1])
C2348235 (UMLS CUI [1,2])
Item Group
Haematological values (at diagnosis)
C0018941 (UMLS CUI-1)
Item
Peripheral blood analysis
text
C0005834 (UMLS CUI [1])
Peripheral blood
Code List
Peripheral blood analysis
CL Item
evaluated (evaluated)
CL Item
not evaluated (not evaluated)
Hb
Item
Peripheral Blood Analysis If evaluated: Hb (g/dL)
float
C0518015 (UMLS CUI [1])
Platelets
Item
Peripheral Blood Analysis If evaluated: Platelets (10^9/L)
float
C0005821 (UMLS CUI [1])
White Blood Cells
Item
Peripheral Blood Analysis If evaluated: White Blood Cells (10^9/L)
float
C0023508 (UMLS CUI [1])
blasts
Item
Peripheral Blood Analysis If evaluated: % blasts
float
C0523113 (UMLS CUI [1])
monocytes
Item
Peripheral Blood Analysis If evaluated: % monocytes
float
C0200637 (UMLS CUI [1])
neutrophils
Item
Peripheral Blood Analysis If evaluated: % neutrophils
float
C0027950 (UMLS CUI [1])
Item
Bone marrow analysis
text
C0005953 (UMLS CUI [1])
Bone marrow
Code List
Bone marrow analysis
CL Item
Evaluated  (Evaluated )
CL Item
Not evaluated (Not evaluated)
blasts
Item
Bone marrow analysis: If evaluated: % blasts
float
C1982687 (UMLS CUI [1])
Item
Bone marrow analysis Auer rods present
text
C2698200 (UMLS CUI [1])
Bone marrow
Code List
Bone marrow analysis Auer rods present
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Not Evaluated (Not Evaluated)
CL Item
Unknown (Unknown)
Item
Fill only for MDS and CMML; do not fill for treatment related secondary Acute leukaemia, or jMML)
text
C2827405 (UMLS CUI [1])
IPSS score
Code List
Fill only for MDS and CMML; do not fill for treatment related secondary Acute leukaemia, or jMML)
CL Item
Low (0) (Low (0))
CL Item
Intermediate-1 (0.5 - 1.0) (Intermediate-1 (0.5 - 1.0))
CL Item
Intermediate-2 (1.5 - 2) (Intermediate-2 (1.5 - 2))
CL Item
High (> 2.5) (High (> 2.5))
CL Item
Unknown (Unknown)
Item
BM Investigation
text
C0005957 (UMLS CUI [1])
BM Investigation
Code List
BM Investigation
CL Item
Cytology (Cytology)
CL Item
Histology (Histology)
CL Item
Not available (Not available)
Item
Results (at diagnosis; check one in each column) Cellularity on BM Aspirate/ BM biopsy
text
C1561532 (UMLS CUI [1])
BM Investigation
Code List
Results (at diagnosis; check one in each column) Cellularity on BM Aspirate/ BM biopsy
CL Item
Acellular (Acellular)
CL Item
Hypocellular (Hypocellular)
CL Item
Normocellular (Normocellular)
CL Item
Hypercellular (Hypercellular)
CL Item
Focal cellularity (Focal cellularity)
CL Item
Unknown (Unknown)
Item
Results (at diagnosis; check one in each column) Fibrosis on BM biopsy
text
C2355575 (UMLS CUI [1])
BM Investigation
Code List
Results (at diagnosis; check one in each column) Fibrosis on BM biopsy
CL Item
No (No)
CL Item
Mild (Mild)
CL Item
Moderate (Moderate)
CL Item
Severe (Severe)
CL Item
Not evaluable (Not evaluable)
CL Item
Unknown (Unknown)
Item Group
First Line Therapy
C1708063 (UMLS CUI-1)
First Line Therapy
Item
First Line Therapy given (If No, proceed to "Subclassification & Status of Disease at HSCT" If Yes, specify start date)
boolean
C1708063 (UMLS CUI [1])
Start Date
Item
Start Date of First Line Therapy
date
C0808070 (UMLS CUI [1])
Item
Myelodysplastic Syndrome (WHO)-Subclassification (Please use the WHO subclassification if possible) (If patient had Secondary Acute Leukaemia related to prior treatment, skip this Subclassification section and proceed to Treatment section)
text
C3463824 (UMLS CUI [1,1])
C0043237 (UMLS CUI [1,2])
(WHO)Subclassification at primary treatment
Code List
Myelodysplastic Syndrome (WHO)-Subclassification (Please use the WHO subclassification if possible) (If patient had Secondary Acute Leukaemia related to prior treatment, skip this Subclassification section and proceed to Treatment section)
CL Item
Refractory Anaemia (without ring sideroblasts) RA (Refractory Anaemia (without ring sideroblasts) RA)
CL Item
RA with ring sideroblasts (RARS) (RA with ring sideroblasts (RARS))
CL Item
MDS associated with isolated del(5q) (MDS associated with isolated del(5q))
CL Item
Refractory cytopenia with multilineage dysplasia (RCMD) (Refractory cytopenia with multilineage dysplasia (RCMD))
CL Item
Refractory cytopenia with multilineage dysplasia and ringed sideroblasts (RCMD-RS) (Refractory cytopenia with multilineage dysplasia and ringed sideroblasts (RCMD-RS))
CL Item
RA with excess of blasts (RAEB-1) (RA with excess of blasts (RAEB-1))
CL Item
RA with excess of blasts (RAEB-2) (RA with excess of blasts (RAEB-2))
CL Item
Childhood myelodysplastic syndrome (Refractory cytopenia of childhood (RCC)) (Childhood myelodysplastic syndrome (Refractory cytopenia of childhood (RCC)))
CL Item
Unclassified (MDS-U) (Unclassified (MDS-U))
Item
Myelodysplastic Syndrome (FAB)-Subclassification
text
C3463824 (UMLS CUI [1,1])
C2984084 (UMLS CUI [1,2])
(FAB)Subclassification at primary treatment
Code List
Myelodysplastic Syndrome (FAB)-Subclassification
CL Item
RA without ring siderboblasts (RA) (RA without ring siderboblasts (RA))
CL Item
RA with ring siderodblasts (RARS) (RA with ring siderodblasts (RARS))
CL Item
RA with excess of blasts (RAEB) (RA with excess of blasts (RAEB))
CL Item
RAEB in transformation (RAEB-t) (RAEB in transformation (RAEB-t))
CL Item
Unclassified (Unclassified)
Item
Myelodysplastic/ Myeloproliferative Neoplasm Specification
text
C1301355 (UMLS CUI [1,1])
C0006826 (UMLS CUI [1,2])
Myelodysplastic/ Myeloproliferative Neoplasm
Code List
Myelodysplastic/ Myeloproliferative Neoplasm Specification
CL Item
Chronic Myelomonocytic Leukaemia (CMMoL, CMML) (Chronic Myelomonocytic Leukaemia (CMMoL, CMML))
CL Item
Type I (Type I)
CL Item
Type II (Type II)
CL Item
Juvenile Myelomonocytic Leukaemia (JCMMoL, JMML, JCML, JCMML) (Juvenile Myelomonocytic Leukaemia (JCMMoL, JMML, JCML, JCMML))
CL Item
Atpyical Chronic Myeloid Leukaemia (Atypical CML, t(9;22)negative and BCR/ABL negative) (Atpyical Chronic Myeloid Leukaemia (Atypical CML, t(9;22)negative and BCR/ABL negative))
Secondary Acute Leukaemia
Item
If transformed into Secondary Acute Leukaemia, specify date of transformation
date
C0280449 (UMLS CUI [1])
Pharmacotherapy
Item
Chemo/drug/agent
boolean
C0013216 (UMLS CUI [1])
Item
If yes, specify
text
C0013216 (UMLS CUI [1,1])
C2348235 (UMLS CUI [1,2])
Treatment
Code List
If yes, specify
CL Item
Ara-C (Ara-C)
CL Item
Hydroxyurea (Hydroxyurea)
CL Item
Retinoic acid (Retinoic acid)
CL Item
Hypomethylating agents (Hypomethylating agents)
CL Item
Histondeacetlyase inhibitor (Histondeacetlyase inhibitor)
CL Item
Other (Other)
CL Item
AML like therapy (AML like therapy)
Specification Pharmacotherapy
Item
If other, specify
text
C0013216 (UMLS CUI [1,1])
C2348235 (UMLS CUI [1,2])
Item
Response to treatment
text
C0521982 (UMLS CUI [1])
Response to treatment
Code List
Response to treatment
CL Item
Complete remission (Complete remission)
CL Item
Never in CR (Never in CR)
Date of first complete remission
Item
If complete remission, date of first CR (If subsequent HSCT, indicate the date of the 1st CR after this treatment)
date
C0011008 (UMLS CUI [1,1])
C0677874 (UMLS CUI [1,2])
Item Group
Subclassification & Status of Disease at HSCT (to be evaluated just before starting conditioning)
C0008902 (UMLS CUI-1)
C0699749 (UMLS CUI-3)
Date of HSCT
Item
Date of HSCT
date
C2584899 (UMLS CUI [1])
Splenectomy
Item
jMML only: fill in splenectomy details
boolean
C0037995 (UMLS CUI [1])
Date of Splenectomy
Item
jMML only: fill in splenectomy details if yes, date of splenectomy
date
C2584899 (UMLS CUI [1])
Item
Transfusion of red blood cells
text
C0086252 (UMLS CUI [1])
Transfusion
Code List
Transfusion of red blood cells
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
Item
Transfusion of red blood cells If yes, specify the amount
text
C0086252 (UMLS CUI [1,1])
C1265611 (UMLS CUI [1,2])
Transfusion
Code List
Transfusion of red blood cells If yes, specify the amount
CL Item
< 20 units (< 20 units)
CL Item
20 - 50 units (20 - 50 units)
CL Item
> 50 units (> 50 units)
Item
Transfusion of platelets
text
C0086818 (UMLS CUI [1])
Transfusion
Code List
Transfusion of platelets
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
Item
Myelodysplastic Syndrome (WHO)-Subclassification (Please use the WHO subclassification if possible) (if patient had Secondary Acute Leukaemia related to prior treatment, skip this section and proceed to "Disease status at HSCT")
text
C3463824 (UMLS CUI [1,1])
C0043237 (UMLS CUI [1,2])
(WHO)Subclassification at HSCT
Code List
Myelodysplastic Syndrome (WHO)-Subclassification (Please use the WHO subclassification if possible) (if patient had Secondary Acute Leukaemia related to prior treatment, skip this section and proceed to "Disease status at HSCT")
CL Item
Refractory Anaemia (without ring sideroblasts) RA (Refractory Anaemia (without ring sideroblasts) RA)
CL Item
RA with ring sideroblasts (RARS) (RA with ring sideroblasts (RARS))
CL Item
MDS associated with isolated del(5q) (MDS associated with isolated del(5q))
CL Item
Refractory cytopenia with multilineage dysplasia (RCMD) (Refractory cytopenia with multilineage dysplasia (RCMD))
CL Item
Refractory cytopenia with multilineage dysplasia and ringed sideroblasts (RCMD-RS) (Refractory cytopenia with multilineage dysplasia and ringed sideroblasts (RCMD-RS))
CL Item
RA with excess of blasts (RAEB-1) (RA with excess of blasts (RAEB-1))
CL Item
RA with excess of blasts (RAEB-2) (RA with excess of blasts (RAEB-2))
CL Item
Childhood myelodysplastic syndrome (Refractory cytopenia of childhood (RCC)) (Childhood myelodysplastic syndrome (Refractory cytopenia of childhood (RCC)))
CL Item
Unclassified (MDS-U) (Unclassified (MDS-U))
Item
Myelodysplastic Syndrome (FAB)-Subclassification
text
C3463824 (UMLS CUI [1,1])
C2984084 (UMLS CUI [1,2])
(FAB)Subclassification at HSCT
Code List
Myelodysplastic Syndrome (FAB)-Subclassification
CL Item
RA without ring siderboblasts (RA) (RA without ring siderboblasts (RA))
CL Item
RA with ring siderodblasts (RARS) (RA with ring siderodblasts (RARS))
CL Item
RA with excess of blasts (RAEB) (RA with excess of blasts (RAEB))
CL Item
RAEB in transformation (RAEB-t) (RAEB in transformation (RAEB-t))
CL Item
Unclassified (Unclassified)
Item
Myelodysplastic/ Myeloproliferative Neoplasm Specification
text
C1301355 (UMLS CUI [1,1])
C0006826 (UMLS CUI [1,2])
Myelodysplastic/ Myeloproliferative Neoplasm at HSCT
Code List
Myelodysplastic/ Myeloproliferative Neoplasm Specification
CL Item
Chronic Myelomonocytic Leukaemia (CMMoL, CMML) (Chronic Myelomonocytic Leukaemia (CMMoL, CMML))
CL Item
Type I (Type I)
CL Item
Type II (Type II)
CL Item
Juvenile Myelomonocytic Leukaemia (JCMMoL, JMML, JCML, JCMML) (Juvenile Myelomonocytic Leukaemia (JCMMoL, JMML, JCML, JCMML))
CL Item
Atpyical Chronic Myeloid Leukaemia (Atypical CML, t(9;22)negative and BCR/ABL negative) (Atpyical Chronic Myeloid Leukaemia (Atypical CML, t(9;22)negative and BCR/ABL negative))
Secondary Acute Leukaemia
Item
If transformed into Secondary Acute Leukaemia, specify date of transformation
date
C0280449 (UMLS CUI [1])
Item Group
Disease Status at HSCT
Item
Treated with intention to achieve remission: (For all diagnosis except jMML (see below for jMML))
text
C0699749 (UMLS CUI [1])
Disease status at HSCT
Code List
Treated with intention to achieve remission: (For all diagnosis except jMML (see below for jMML))
CL Item
Primary refractory phase (no change) (Primary refractory phase (no change))
CL Item
Complete remission (CR) (Complete remission (CR))
CL Item
Improvement but no CR (Improvement but no CR)
CL Item
Relapse (after CR) (Relapse (after CR))
CL Item
Progression/ worse (Progression/ worse)
CL Item
Untreated (Supportive care or treatment without intetion to achieve remission) (Untreated (Supportive care or treatment without intetion to achieve remission))
Item
If CR or relapse, specify number:
text
C0677874 (UMLS CUI [1,1])
C0237753 (UMLS CUI [1,2])
C0277556 (UMLS CUI [2,1])
C0237753 (UMLS CUI [2,2])
Disease Status at HSCT
Code List
If CR or relapse, specify number:
CL Item
1st (1st)
CL Item
2nd (2nd)
CL Item
3rd or higher (3rd or higher)
Item
For jMML only:
text
C0699749 (UMLS CUI [1,1])
C0349639 (UMLS CUI [1,2])
Disease Status at HSCT (jMML)
Code List
For jMML only:
CL Item
Complete remission (Complete remission)
CL Item
Partial remission (Partial remission)
CL Item
Minor response (Minor response)
CL Item
Stable disease (Stable disease)
CL Item
Progressive disease (Progressive disease)
Item Group
Cytogenetics Data (Within 2 months of the preparative -conditioning- regimen)
Item
Chromosome analysis
text
C0200867 (UMLS CUI [1])
Chromosome analysis
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)
text
C3273253 (UMLS CUI [1])
Chromosome analysis
Code List
if abnormal: are there 3 or more abnormalities (complex kariotype)
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
Item
Indicate which abnormalties found:
text
C0200867 (UMLS CUI [1,1])
C2348235 (UMLS CUI [1,2])
Chromosome analysis
Code List
Indicate which abnormalties found:
CL Item
del Y (-Y) (del Y (-Y))
CL Item
del 5q (5q-) (del 5q (5q-))
CL Item
Other abn 5 (Other abn 5)
CL Item
del 20q (20q-) (del 20q (20q-))
CL Item
del 7q (7q-) (del 7q (7q-))
CL Item
Other abn 7 (Other abn 7)
CL Item
Other abnormalities (Other abnormalities)
Item
Indicate which abnormalities found:
text
C0200867 (UMLS CUI [1])
Chromosome analysis
Code List
Indicate which abnormalities found:
CL Item
absent (absent)
CL Item
present (present)
Specification - other
Item
If other, specify:
text
C0200867 (UMLS CUI [1,1])
C2348235 (UMLS CUI [1,2])
Item Group
Haematological values at HSCT (to be evaluated just before starting the preparative -conditioning- regimen)
Item
Peripheral blood analysis
text
C0005834 (UMLS CUI [1])
Peripheral blood
Code List
Peripheral blood analysis
CL Item
evaluated (evaluated)
CL Item
not evaluated (not evaluated)
Hb
Item
Peripheral Blood Analysis If evaluated: Hb (g/dL)
float
C0518015 (UMLS CUI [1])
Platelets
Item
Peripheral Blood Analysis If evaluated: Platelets (10^9/L)
float
C0005821 (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
Peripheral blood analysis If evaluated: % blasts
float
C0523113 (UMLS CUI [1])
monocytes
Item
Peripheral blood analysis: If evaluated: % monocytes
float
C0200637 (UMLS CUI [1])
neutrophils
Item
Peripheral blood analysis: If evaluated: % neutrophils
float
C0027950 (UMLS CUI [1])
Item
Bone marrow analysis
text
C0005953 (UMLS CUI [1])
Bone Marrow
Code List
Bone marrow analysis
CL Item
Evaluated (Evaluated)
CL Item
Not evaluated (Not evaluated)
blasts
Item
Bone marrow analysis: If evaluated: % blasts
float
C1982687 (UMLS CUI [1])
Item
Bone marrow analysis Auer rods present
text
C2698200 (UMLS CUI [1])
Bone marrow
Code List
Bone marrow analysis Auer rods present
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Not Evaluated (Not Evaluated)
CL Item
Unknown (Unknown)
Item
Fill only for MDS and CMML:
text
C2827405 (UMLS CUI [1])
IPSS Score
Code List
Fill only for MDS and CMML:
CL Item
Low (0) (Low (0))
CL Item
Intermediate-1 (0.5 - 1.0) (Intermediate-1 (0.5 - 1.0))
CL Item
Intermediate-2 (1.5 - 2) (Intermediate-2 (1.5 - 2))
CL Item
High (> 2.5) (High (> 2.5))
CL Item
Unknown (Unknown)
Item
Within 2 months of the preparative -conditoning- regimen:
text
C0005957 (UMLS CUI [1])
BM Investigation
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
Results (at diagnosis; check one in each column) Cellularity on BM Aspirate/ BM biopsy
text
C1561532 (UMLS CUI [1])
BM Investigation
Code List
Results (at diagnosis; check one in each column) Cellularity on BM Aspirate/ BM biopsy
CL Item
Acellular (Acellular)
CL Item
Hypocellular (Hypocellular)
CL Item
Normocellular (Normocellular)
CL Item
Hypercellular (Hypercellular)
CL Item
Focal cellularity (Focal cellularity)
CL Item
Unknown (Unknown)
Item
Results (at diagnosis; check one in each column) Fibrosis on BM biopsy
text
C2355575 (UMLS CUI [1])
BM Investigation
Code List
Results (at diagnosis; check one in each column) Fibrosis on BM biopsy
CL Item
No (No)
CL Item
Mild (Mild)
CL Item
Moderate (Moderate)
CL Item
Severe (Severe)
CL Item
Not evaluable (Not evaluable)
CL Item
Unknown (Unknown)
Item Group
Additional Treatment Post-HSCT
Item
Additional Treatment Post-HSCT
text
C1706712 (UMLS CUI [1])
Additional Treatment Post-HSCT
Code List
Additional Treatment Post-HSCT
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
Item
If yes, planned or not planned
text
C1706712 (UMLS CUI [1,1])
C1301732 (UMLS CUI [1,2])
Additional Treatment Post-HSCT
Code List
If yes, planned or not planned
CL Item
Planned (planned before HSCT took place) (Planned (planned before HSCT took place))
CL Item
Not planned (for relapse/ progression or persistent disease) (Not planned (for relapse/ progression or persistent disease))
Start date of additional treatment Post-HSCT
Item
If yes, specify start date:
date
C1706712 (UMLS CUI [1,1])
C0808070 (UMLS CUI [1,2])
Item
If yes: Chemo/ drug/agent therapy (including MoAB, etc.)
text
C1706712 (UMLS CUI [1,1])
C0013216 (UMLS CUI [1,2])
Additional Treatment
Code List
If yes: Chemo/ drug/agent therapy (including MoAB, etc.)
CL Item
No  (No )
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
Pharmacotherapy Specification
Item
If additional chemo/drug/agent treatment, specify:
text
C0013216 (UMLS CUI [1,1])
C2348235 (UMLS CUI [1,2])
Item
If yes: Other treatment
text
C1706712 (UMLS CUI [1])
Additional Treatment Post-HSCT
Code List
If yes: Other treatment
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
Other Additional Treatment Post-HSCT - Specification
Item
If other treatment, specify:
text
C1706712 (UMLS CUI [1,1])
C2348235 (UMLS CUI [1,2])
Item Group
Best Disease Response at 100 days post-HSCT
Item
Best Disease Response at 100 days post-HSCT
text
C1704632 (UMLS CUI [1])
Best Disease Response at 100 days post-HSCT
Code List
Best Disease Response at 100 days post-HSCT
CL Item
CR (maintained or achieved) (CR (maintained or achieved))
CL Item
Relapse/ Progression (Relapse/ Progression)
CL Item
Unknown (Unknown)
CL Item
Not evaluable (Not evaluable)
Item Group
Forms to be filled in
Item
Type of HSCT (Check all that apply):
text
C0472699 (UMLS CUI [1])
Type of HSCT
Code List
Type of HSCT (Check all that apply):
CL Item
AUTOgraft, proceed to Autograft form (AUTOgraft, proceed to Autograft form)
CL Item
ALLOgraft or Synergenic graft, proceed to Allograft form (ALLOgraft or Synergenic graft, proceed to Allograft form)
CL Item
Other, contact the EBMT Central Registry Office for instructions (Other, contact the EBMT Central Registry Office for instructions)
Other Type of HSCT
Item
If other, specify, and contact the EBMT Central Registry Office for instructions
text
C0472699 (UMLS CUI [1])
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