ID

42035

Beschrijving

ODM form derived from 113pp EBMT Haemoglobinopathy 12Hgbpthy.pdf 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

Trefwoorden

Versies (4)
  1. 18-03-16 18-03-16 -
  2. 26-07-16 26-07-16 -
  3. 15-03-21 15-03-21 - Dr. rer. medic Philipp Neuhaus
  4. 20-09-21 20-09-21 -
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15 maart 2021

DOI

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Licentie

Creative Commons BY-NC 3.0
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EBMT Haemoglobinopathy General Information

Engels

EBMT Haemoglobinopathy General Information

1 Formulieren  
GENERAL INFORMATION
Beschrijving

GENERAL INFORMATION

GENERAL INFORMATION
Beschrijving

GENERAL INFORMATION

Datatype

text

Alias
UMLS CUI [1]
C1508263
Hospital
Beschrijving

Hospital

Datatype

integer

Alias
UMLS CUI [1]
C0019994
Unit
Beschrijving

Unit

Datatype

integer

Alias
UMLS CUI [1]
C1519795
Name of a Contact Person
Beschrijving

Contact Person

Datatype

text

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

Telephone

Datatype

text

Alias
UMLS CUI [1]
C1515258
Fax
Beschrijving

Fax

Datatype

integer

Alias
UMLS CUI [1]
C1549619
E-mail
Beschrijving

ContactPersonE-mailText

Datatype

integer

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

Date of this report

Datatype

date

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

Patient in Trial

Datatype

integer

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

Name of study / trial

Datatype

integer

Alias
UMLS CUI [1]
C0008976
Patient
Beschrijving

Patient

Unique Identification Code (UIC)
Beschrijving

Unique Identification Code

Datatype

integer

Alias
UMLS CUI [1]
C1827636
Hospital Unique Patient Number or Code
Beschrijving

Patient Number

Datatype

integer

Alias
UMLS CUI [1]
C1830427
First name(s) - surname(s) (Registration will not be accepted if this item is left blank)
Beschrijving

Initials

Datatype

integer

Alias
UMLS CUI [1]
C2986440
Date of birth
Beschrijving

Date of birth

Datatype

date

Alias
UMLS CUI [1]
C0421451
Sex
Beschrijving

Patient Gender

Datatype

integer

Alias
UMLS CUI [1]
C0079399
ABO Group
Beschrijving

ABO Group

Datatype

integer

Alias
UMLS CUI [1]
C0000778
Rh factor
Beschrijving

Rh factor

Datatype

integer

Alias
UMLS CUI [1]
C0035403
DISEASE
Beschrijving

DISEASE

Date of diagnosis
Beschrijving

Date of diagnosis

Datatype

date

Alias
UMLS CUI [1]
C2316983
Primary Disease Diagnosis
Beschrijving

Check the disease for which this transplant was performed (if other diagnosis, specify)

Datatype

integer

Alias
UMLS CUI [1]
C0277554
Disease Diagnosis
Beschrijving

Disease Diagnosis

Datatype

integer

Alias
UMLS CUI [1]
C0011900
Typ of Thalassemia
Beschrijving

Typ of Thalassemia

Datatype

integer

Alias
UMLS CUI [1]
C0039730
If use other diagnosis, specification
Beschrijving

Primary Disease Diagnosis

Datatype

text

Alias
UMLS CUI [1]
C0277554
Sickle cell anaemia (ßS) %
Beschrijving

if use Compound Heterozygous States

Datatype

integer

Maateenheden
  • Sickle (ßS) %
Alias
UMLS CUI [1]
C0002895
Sickle (ßS) %
PRE-HSCT BIOLOGICAL FEATURES
Beschrijving

Molecular marker test

Datatype

integer

Alias
UMLS CUI [1,1]
C0472699
UMLS CUI [1,2]
C0332152
PRE-HSCT MAIN CLINICAL FEATURES
Beschrijving

PRE-HSCT MAIN CLINICAL FEATURES

Datatype

integer

Alias
UMLS CUI [1,1]
C1705576
UMLS CUI [1,2]
C3554759
Splenomegaly present?
Beschrijving

Splenomegaly

Datatype

integer

Alias
UMLS CUI [1]
C0038002
Splenomegaly: Spleen size
Beschrijving

if use present: Spleen size

Datatype

integer

Maateenheden
  • cm under costal margin
Alias
UMLS CUI [1,1]
C0038002
UMLS CUI [1,2]
C0437634
cm under costal margin
Hepatomegaly
Beschrijving

Hepatomegaly

Datatype

integer

Alias
UMLS CUI [1]
C0019209
Hepatomegaly
Beschrijving

if use Present: Liver size

Datatype

integer

Maateenheden
  • cm under costal margin
Alias
UMLS CUI [1,1]
C1856554
UMLS CUI [1,2]
C2363138
cm under costal margin
Diabetes
Beschrijving

Diabetes

Datatype

integer

Alias
UMLS CUI [1]
C0011849
Diabetes
Beschrijving

if use yes

Datatype

integer

Alias
UMLS CUI [1]
C0011849
CLINICAL FEATURES AND COMPLICATIONS
Beschrijving

CLINICAL FEATURES AND COMPLICATIONS

Gonadal dysfunction
Beschrijving

Gonadal dysfunction

Datatype

integer

Alias
UMLS CUI [1]
C0018050
Substitutional hormonal therapy
Beschrijving

Substitutional hormonal therapy

Datatype

integer

Alias
UMLS CUI [1]
C0279025
Growth impairment
Beschrijving

Growth impairment

Datatype

integer

Alias
UMLS CUI [1]
C0018273
Red blood cell immunization
Beschrijving

Red blood cell immunization

Datatype

integer

Alias
UMLS CUI [1,1]
C0020971
UMLS CUI [1,2]
C0014792
Sickle nephropathy (glomerular filtration rate 30-50% predicted)
Beschrijving

Sickle nephropathy

Datatype

integer

Alias
UMLS CUI [1]
C0238305
Central nervous system haemorrhage
Beschrijving

Central nervous system haemorrhage

Datatype

integer

Alias
UMLS CUI [1]
C3267019
Recurrent acute chest syndrome
Beschrijving

Recurrent acute chest syndrome

Datatype

integer

Alias
UMLS CUI [1]
C0742343
Impaired neuropsychologic function and abnormal Magnetic Resonance Imaging scan
Beschrijving

Impaired neuropsychologic function and abnormal Magnetic Resonance Imaging scan

Datatype

integer

Alias
UMLS CUI [1]
C1696486
UMLS CUI [2]
C0024485
Bilateral proliferative retinopathy and visual impairment
Beschrijving

Bilateral proliferative retinopathy and visual impairment

Datatype

integer

Alias
UMLS CUI [1]
C0339467
UMLS CUI [2]
C3665347
Osteonecrosis of multiple joints
Beschrijving

Osteonecrosis

Datatype

integer

Alias
UMLS CUI [1]
C0029445
If Other CLINICAL ABNORMALITIES INDICATING THE SEVERITY OF THE PRIMARY DISEASE
Beschrijving

CLINICAL ABNORMALITIES INDICATING THE SEVERITY OF THE PRIMARY DISEASE

Datatype

integer

Alias
UMLS CUI [1]
C1704258
If DISEASES NOT RELATED TO THE TREATMENT OF HEMOGLOBINOPATHY
Beschrijving

MAJOR DISEASES NOT RELATED TO THE TREATMENT OF HEMOGLOBINOPATHY

Datatype

integer

Alias
UMLS CUI [1]
C0012634
CHELATION TREATMENT PRE-HSCT
Beschrijving

CHELATION TREATMENT PRE-HSCT

Datatype

integer

Alias
UMLS CUI [1]
C0884737
If CHELATION TREATMENT PRE-HSCT
Beschrijving

Start CHELATION TREATMENT PRE-HSCT

Datatype

date

Alias
UMLS CUI [1,1]
C0884737
UMLS CUI [1,2]
C3173309
STATUS OF DISEASE AT HSCT
Beschrijving

STATUS OF DISEASE AT HSCT

Date of HSCT
Beschrijving

Date of HSCT

Datatype

date

Alias
UMLS CUI [1]
C2584899
Splenectomy
Beschrijving

Splenectomy

Datatype

text

Alias
UMLS CUI [1]
C0037995
Date of Splenectomy
Beschrijving

Splenectomy

Datatype

date

Alias
UMLS CUI [1,1]
C0037995
UMLS CUI [1,2]
C2584899
RBC Transfusions
Beschrijving

RBC Transfusions

Datatype

integer

Alias
UMLS CUI [1]
C0086252
if RBC Transfusions: Age at transfusion (months)
Beschrijving

if RBC Transfusions: Age at transfusion (months)

Datatype

integer

Alias
UMLS CUI [1,1]
C0086252
UMLS CUI [1,2]
C0001779
if RBC Transfusions: Total number of RBC units transfused
Beschrijving

Total number of RBC units transfused

Datatype

integer

Alias
UMLS CUI [1,1]
C0086252
UMLS CUI [1,2]
C1317795
Enzymes
Beschrijving

Enzymes

LDH Value
Beschrijving

LDH

Datatype

float

Alias
UMLS CUI [1]
C0202113
LDH unit
Beschrijving

LDH

Datatype

float

Alias
UMLS CUI [1]
C0022917
LDH Times Upper Limit
Beschrijving

LDH Times Upper Limit

Datatype

float

Alias
UMLS CUI [1,1]
C0202113
UMLS CUI [1,2]
C2827740
LDH not evaluated
Beschrijving

LDH not evaluated

Datatype

integer

Alias
UMLS CUI [1,1]
C0202113
UMLS CUI [1,2]
C0220825
AST (SGOT)
Beschrijving

AST (SGOT)

Datatype

integer

Alias
UMLS CUI [1]
C0201899
ALT (SGPT)
Beschrijving

ALT (SGPT)

Datatype

integer

Alias
UMLS CUI [1]
C0201836
Gamma GT
Beschrijving

Gamma GT

Datatype

integer

Alias
UMLS CUI [1]
C0202035
Albumin
Beschrijving

Albumin

Datatype

integer

Alias
UMLS CUI [1]
C0201838
Bilirubin
Beschrijving

Bilirubin

Datatype

integer

Maateenheden
  • mg/dl
Alias
UMLS CUI [1]
C1278039
Ferritin
Beschrijving

Ferritin

Datatype

integer

Maateenheden
  • ng/ml
Alias
UMLS CUI [1]
C0015879
Total Transferrin
Beschrijving

Transferrin

Datatype

integer

Maateenheden
  • mg/dl
Alias
UMLS CUI [1]
C0202105
Unbounded Transferrin
Beschrijving

Unbounded Transferrin

Datatype

integer

Maateenheden
  • mg/dl
Alias
UMLS CUI [1]
C0202105
mg/dl
LIVER FUNCTION
Beschrijving

LIVER FUNCTION

Evidence of hepatitis or other liver disease
Beschrijving

Evidence of hepatitis or other liver disease

Datatype

integer

Alias
UMLS CUI [1]
C0019158
UMLS CUI [2]
C0023895
Types of Hepatitis
Beschrijving

Types of Hepatitis

Datatype

integer

Liver biopsy performed
Beschrijving

Liver biopsy

Datatype

integer

Alias
UMLS CUI [1]
C0193388
RESULTS OF LIVER BIOPSY
Beschrijving

RESULTS OF LIVER BIOPSY

Hepatitis
Beschrijving

Hepatitis

Datatype

integer

Alias
UMLS CUI [1]
C0019158
Siderosis
Beschrijving

Siderosis

Datatype

integer

Alias
UMLS CUI [1]
C0037061
Fibrosis
Beschrijving

Fibrosis

Datatype

integer

Alias
UMLS CUI [1]
C0016059
if Fibrosis Present
Beschrijving

if Fibrosis Present

Datatype

integer

Alias
UMLS CUI [1]
C0016059
CARDIAC FUNCTION
Beschrijving

CARDIAC FUNCTION

History of cardiac insufficiency:
Beschrijving

cardiac insufficiency

Datatype

integer

Alias
UMLS CUI [1]
C0018802
if History of cardiac insufficiency: Type of therapy
Beschrijving

if History of cardiac insufficiency: Type of therapy

Datatype

integer

Alias
UMLS CUI [1,1]
C0087111
UMLS CUI [1,2]
C0018802
Left Ventricular Ejection Fraction
Beschrijving

LVEF

Datatype

integer

Maateenheden
  • %
Alias
UMLS CUI [1]
C0428772
OTHER CLINICALLY SIGNIFICANT ORGAN INVOLVEMENT
Beschrijving

ORGAN INVOLVEMENT

Datatype

integer

Alias
UMLS CUI [1]
C0457577
CLASS
Beschrijving

CLASS

Datatype

integer

Alias
UMLS CUI [1]
C0456387
ADDITIONAL TREATMENT POST-HSCT
Beschrijving

ADDITIONAL TREATMENT POST-HSCT

ADDITIONAL DISEASE TREATMENT
Beschrijving

ADDITIONAL DISEASE TREATMENT

Datatype

integer

Alias
UMLS CUI [1]
C1706712
if ADDITIONAL DISEASE TREATMENT
Beschrijving

ADDITIONAL DISEASE TREATMENT

Datatype

integer

Alias
UMLS CUI [1]
C1706712
FORMS TO BE FILLED IN
Beschrijving

FORMS TO BE FILLED IN

Type of Transplant
Beschrijving

Type of Transplant

Datatype

integer

Alias
UMLS CUI [1,1]
C0559189
UMLS CUI [1,2]
C0040739
if other Type of Transplant
Beschrijving

Type of Transplant

Datatype

integer

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

EBMT Haemoglobinopathy General Information

1 Formulieren
Name
Type
Description | Question | Decode (Coded Value)
Datatype
Alias
Item Group
GENERAL INFORMATION
GENERAL INFORMATION
Item
GENERAL INFORMATION
text
C1508263 (UMLS CUI [1])
Hospital
Item
Hospital
integer
C0019994 (UMLS CUI [1])
Unit
Item
Unit
integer
C1519795 (UMLS CUI [1])
Contact Person
Item
Name of a Contact Person
text
C0337611 (UMLS CUI [1])
Telephone
Item
Telephone number of contact person
text
C1515258 (UMLS CUI [1])
Fax
Item
Fax
integer
C1549619 (UMLS CUI [1])
ContactPersonE-mailText
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])
Patient in Trial
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
Patient
Unique Identification Code
Item
Unique Identification Code (UIC)
integer
C1827636 (UMLS CUI [1])
Patient Number
Item
Hospital Unique Patient Number or Code
integer
C1830427 (UMLS CUI [1])
Initials
Item
First name(s) - surname(s) (Registration will not be accepted if this item is left blank)
integer
C2986440 (UMLS CUI [1])
Date of birth
Item
Date of birth
date
C0421451 (UMLS CUI [1])
Item
Sex
integer
C0079399 (UMLS CUI [1])
PatientGender
Code List
Sex
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])
Item
Rh factor
integer
C0035403 (UMLS CUI [1])
Rh factor
Code List
Rh factor
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
Item Group
DISEASE
Date of diagnosis
Item
Date of diagnosis
date
C2316983 (UMLS CUI [1])
Item
Primary Disease Diagnosis
integer
C0277554 (UMLS CUI [1])
Primary Disease Diagnosis
Code List
Primary Disease Diagnosis
CL Item
Acute Leukaemia (Acute Leukaemia)
C0085669 (UMLS CUI-1)
CL Item
Myelogenous (AML) (Myelogenous (AML))
C0023467 (UMLS CUI-1)
CL Item
Lymphoblastic (ALL) (Lymphoblastic (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 (CLL))
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 Tumor (Solid Tumor)
C0280100 (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 (Histocytic Disorders)
C0019613 (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
Haemoglobinopathy (Haemoglobinopathy)
C0019045 (UMLS CUI-1)
CL Item
Other diagnosis (Other diagnosis)
C0205394 (UMLS CUI-1)
Item
Disease Diagnosis
integer
C0011900 (UMLS CUI [1])
Primary Disease Diagnosis
Code List
Disease Diagnosis
CL Item
Thalassemia (1)
C0039730 (UMLS CUI-1)
CL Item
Other thalassemia (2)
C0477306 (UMLS CUI-1)
CL Item
Sickle cell anaemia (3)
C0002895 (UMLS CUI-1)
CL Item
Compound Heterozygous States (4)
C1867537 (UMLS CUI-1)
CL Item
Other, specify (5)
C1299220 (UMLS CUI-1)
Item
Typ of Thalassemia
integer
C0039730 (UMLS CUI [1])
Primary Disease Diagnosis Thalassemia
Code List
Typ of Thalassemia
CL Item
ß° (1)
C0271980 (UMLS CUI-1)
CL Item
ß+ (2)
C0005283 (UMLS CUI-1)
Primary Disease Diagnosis
Item
If use other diagnosis, specification
text
C0277554 (UMLS CUI [1])
Sickle cell anaemia (ßS) %
Item
Sickle cell anaemia (ßS) %
integer
C0002895 (UMLS CUI [1])
Item
PRE-HSCT BIOLOGICAL FEATURES
integer
C0472699 (UMLS CUI [1,1])
C0332152 (UMLS CUI [1,2])
PRE-HSCT BIOLOGICAL FEATURES Molecular marker test
Code List
PRE-HSCT BIOLOGICAL FEATURES
CL Item
Done (1)
CL Item
Not evaluated (2)
C3846720 (UMLS CUI-1)
Item
PRE-HSCT MAIN CLINICAL FEATURES
integer
C1705576 (UMLS CUI [1,1])
C3554759 (UMLS CUI [1,2])
PRE-HSCT MAIN CLINICAL FEATURES
Code List
PRE-HSCT MAIN CLINICAL FEATURES
CL Item
Splenomegaly (1)
C0038002 (UMLS CUI-1)
CL Item
Hepatomegaly (2)
C0019209 (UMLS CUI-1)
CL Item
Diabetes (3)
C0011849 (UMLS CUI-1)
Item
Splenomegaly present?
integer
C0038002 (UMLS CUI [1])
Splenomegaly
Code List
Splenomegaly present?
CL Item
Absent (1)
C1856555 (UMLS CUI-1)
CL Item
Present (2)
C0038002 (UMLS CUI-1)
CL Item
Not applicable (3)
C1272460 (UMLS CUI-1)
Splenomegaly: Spleen size
Item
Splenomegaly: Spleen size
integer
C0038002 (UMLS CUI [1,1])
C0437634 (UMLS CUI [1,2])
Item
Hepatomegaly
integer
C0019209 (UMLS CUI [1])
Hepatomegaly
Code List
Hepatomegaly
CL Item
Absent (1)
C0019209 (UMLS CUI-1)
CL Item
Present (2)
C1856554 (UMLS CUI-1)
hepatomegaly
Item
Hepatomegaly
integer
C1856554 (UMLS CUI [1,1])
C2363138 (UMLS CUI [1,2])
Item
Diabetes
integer
C0011849 (UMLS CUI [1])
Diabetes
Code List
Diabetes
CL Item
no (1)
CL Item
yes (2)
Item
Diabetes
integer
C0011849 (UMLS CUI [1])
Diabetes
Code List
Diabetes
CL Item
Insulin required occasionally (1)
C3278783 (UMLS CUI-1)
CL Item
Insulin required regularly (2)
C4020137 (UMLS CUI-1)
Item Group
CLINICAL FEATURES AND COMPLICATIONS
Item
Gonadal dysfunction
integer
C0018050 (UMLS CUI [1])
Gonadal dysfunction
Code List
Gonadal dysfunction
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
Substitutional hormonal therapy
integer
C0279025 (UMLS CUI [1])
Substitutional hormonal therapy
Code List
Substitutional hormonal therapy
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
Growth impairment
integer
C0018273 (UMLS CUI [1])
Growth impairment
Code List
Growth impairment
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
Red blood cell immunization
integer
C0020971 (UMLS CUI [1,1])
C0014792 (UMLS CUI [1,2])
Red blood cell immunization
Code List
Red blood cell immunization
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
Sickle nephropathy (glomerular filtration rate 30-50% predicted)
integer
C0238305 (UMLS CUI [1])
Sickle nephropathy
Code List
Sickle nephropathy (glomerular filtration rate 30-50% predicted)
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
Central nervous system haemorrhage
integer
C3267019 (UMLS CUI [1])
Stroke or central nervous system haemorrhage
Code List
Central nervous system haemorrhage
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
Recurrent acute chest syndrome
integer
C0742343 (UMLS CUI [1])
Recurrent acute chest syndrome
Code List
Recurrent acute chest syndrome
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
Impaired neuropsychologic function and abnormal Magnetic Resonance Imaging scan
integer
C1696486 (UMLS CUI [1])
C0024485 (UMLS CUI [2])
Impaired neuropsychologic function and abnormal Magnetic Resonance Imaging scan
Code List
Impaired neuropsychologic function and abnormal Magnetic Resonance Imaging scan
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
Bilateral proliferative retinopathy and visual impairment
integer
C0339467 (UMLS CUI [1])
C3665347 (UMLS CUI [2])
Bilateral proliferative retinopathy and visual impairment
Code List
Bilateral proliferative retinopathy and visual impairment
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
Osteonecrosis of multiple joints
integer
C0029445 (UMLS CUI [1])
Osteonecrosis of multiple joints
Code List
Osteonecrosis of multiple joints
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)
CLINICAL ABNORMALITIES INDICATING THE SEVERITY OF THE PRIMARY DISEASE
Item
If Other CLINICAL ABNORMALITIES INDICATING THE SEVERITY OF THE PRIMARY DISEASE
integer
C1704258 (UMLS CUI [1])
MAJOR DISEASES NOT RELATED TO THE TREATMENT OF HEMOGLOBINOPATHY
Item
If DISEASES NOT RELATED TO THE TREATMENT OF HEMOGLOBINOPATHY
integer
C0012634 (UMLS CUI [1])
Item
CHELATION TREATMENT PRE-HSCT
integer
C0884737 (UMLS CUI [1])
CHELATION TREATMENT PRE-HSCT
Code List
CHELATION TREATMENT PRE-HSCT
CL Item
Yes (1)
CL Item
Irregular (2)
CL Item
Regular (3)
CL Item
NO (4)
CHELATION TREATMENT PRE-HSCT
Item
If CHELATION TREATMENT PRE-HSCT
date
C0884737 (UMLS CUI [1,1])
C3173309 (UMLS CUI [1,2])
Item Group
STATUS OF DISEASE AT HSCT
Date of HSCT
Item
Date of HSCT
date
C2584899 (UMLS CUI [1])
Item
Splenectomy
text
C0037995 (UMLS CUI [1])
Splenectomy
Code List
Splenectomy
CL Item
no (1)
CL Item
yes (2)
Splenectomy
Item
Date of Splenectomy
date
C0037995 (UMLS CUI [1,1])
C2584899 (UMLS CUI [1,2])
Item
RBC Transfusions
integer
C0086252 (UMLS CUI [1])
RBC Transfusions
Code List
RBC Transfusions
CL Item
no (1)
CL Item
yes (2)
if RBC Transfusions: Age at transfusion (months)
Item
if RBC Transfusions: Age at transfusion (months)
integer
C0086252 (UMLS CUI [1,1])
C0001779 (UMLS CUI [1,2])
if RBC Transfusions: Total number of RBC units transfused
Item
if RBC Transfusions: Total number of RBC units transfused
integer
C0086252 (UMLS CUI [1,1])
C1317795 (UMLS CUI [1,2])
Item Group
Enzymes
LDH
Item
LDH Value
float
C0202113 (UMLS CUI [1])
LDH
Item
LDH unit
float
C0022917 (UMLS CUI [1])
LDH Times Upper Limit
Item
LDH Times Upper Limit
float
C0202113 (UMLS CUI [1,1])
C2827740 (UMLS CUI [1,2])
LDH not evaluated
Item
LDH not evaluated
integer
C0202113 (UMLS CUI [1,1])
C0220825 (UMLS CUI [1,2])
Item
AST (SGOT)
integer
C0201899 (UMLS CUI [1])
AST (SGOT)
Code List
AST (SGOT)
CL Item
Unit  (1)
C1519795 (UMLS CUI-1)
CL Item
Times upper limit  (2)
C2827740 (UMLS CUI-1)
CL Item
not evaluated  (3)
C3846720 (UMLS CUI-1)
CL Item
Value (4)
C1522609 (UMLS CUI-1)
Item
ALT (SGPT)
integer
C0201836 (UMLS CUI [1])
ALT (SGPT)
Code List
ALT (SGPT)
CL Item
Unit (1)
C1519795 (UMLS CUI-1)
CL Item
Times Upper Limit (2)
C2827740 (UMLS CUI-1)
CL Item
not evaluated  (3)
C3846720 (UMLS CUI-1)
CL Item
Value (4)
C1522609 (UMLS CUI-1)
Item
Gamma GT
integer
C0202035 (UMLS CUI [1])
Gamma GT
Code List
Gamma GT
CL Item
Value (1)
C1522609 (UMLS CUI-1)
CL Item
Times Upper Limit  (2)
C2827740 (UMLS CUI-1)
CL Item
Not Evaluated (3)
C3846720 (UMLS CUI-1)
Item
Albumin
integer
C0201838 (UMLS CUI [1])
Albumin
Code List
Albumin
CL Item
Not evaluated (1)
C3846720 (UMLS CUI-1)
Item
Bilirubin
integer
C1278039 (UMLS CUI [1])
Bilirubin
Code List
Bilirubin
CL Item
Direct bilirubin  (1)
C0201916 (UMLS CUI-1)
CL Item
Not evaluated  (2)
C3846720 (UMLS CUI-1)
CL Item
Total serum bilirubin (3)
C1278039 (UMLS CUI-1)
Item
Ferritin
integer
C0015879 (UMLS CUI [1])
Ferritin
Code List
Ferritin
CL Item
Not evaluated (1)
Item
Total Transferrin
integer
C0202105 (UMLS CUI [1])
Total Transferrin
Code List
Total Transferrin
CL Item
Not evaluated (1)
Unbounded Transferrin
Item
Unbounded Transferrin
integer
C0202105 (UMLS CUI [1])
Item Group
LIVER FUNCTION
Item
Evidence of hepatitis or other liver disease
integer
C0019158 (UMLS CUI [1])
C0023895 (UMLS CUI [2])
Evidence of hepatitis or other liver disease
Code List
Evidence of hepatitis or other liver disease
CL Item
no (1)
CL Item
yes (2)
Item
Types of Hepatitis
integer
Evidence of hepatitis or other liver disease
Code List
Types of Hepatitis
CL Item
Hepatitis B (1)
C0019163 (UMLS CUI-1)
CL Item
Hepatitis C (2)
C0019196 (UMLS CUI-1)
CL Item
Hepatitis unspecified (3)
C0019158 (UMLS CUI-1)
CL Item
other (4)
C0029545 (UMLS CUI-1)
Item
Liver biopsy performed
integer
C0193388 (UMLS CUI [1])
Liver biopsy performed
Code List
Liver biopsy performed
CL Item
no (1)
C1298908 (UMLS CUI-1)
CL Item
yes (2)
C1705108 (UMLS CUI-1)
Item Group
RESULTS OF LIVER BIOPSY
Item
Hepatitis
integer
C0019158 (UMLS CUI [1])
Hepatitis
Code List
Hepatitis
CL Item
Chronic persistent hepatitis (1)
C0149519 (UMLS CUI-1)
CL Item
Chronic active hepatitis (2)
C0520463 (UMLS CUI-1)
CL Item
Absent (3)
C0332197 (UMLS CUI-1)
Item
Siderosis
integer
C0037061 (UMLS CUI [1])
Siderosis
Code List
Siderosis
CL Item
Present (1)
C0150312 (UMLS CUI-1)
CL Item
Mild (2)
C2945599 (UMLS CUI-1)
CL Item
Moderate (3)
C0205081 (UMLS CUI-1)
CL Item
Severe (4)
C0205082 (UMLS CUI-1)
CL Item
Absent (5)
C0332197 (UMLS CUI-1)
Item
Fibrosis
integer
C0016059 (UMLS CUI [1])
Fibrosis
Code List
Fibrosis
CL Item
Present (1)
C0150312 (UMLS CUI-1)
CL Item
Absent (2)
C0332197 (UMLS CUI-1)
Item
if Fibrosis Present
integer
C0016059 (UMLS CUI [1])
Fibrosis
Code List
if Fibrosis Present
CL Item
Present without bridging (1)
CL Item
Present with complete porto-portal and/or porto-central bridging (2)
CL Item
Present with cirrhosis (3)
Item Group
CARDIAC FUNCTION
Item
History of cardiac insufficiency:
integer
C0018802 (UMLS CUI [1])
History of cardiac insufficiency
Code List
History of cardiac insufficiency:
CL Item
no (1)
CL Item
yes (2)
Item
if History of cardiac insufficiency: Type of therapy
integer
C0087111 (UMLS CUI [1,1])
C0018802 (UMLS CUI [1,2])
History of cardiac insufficiency:
Code List
if History of cardiac insufficiency: Type of therapy
CL Item
no (1)
C1298908 (UMLS CUI-1)
CL Item
yes (2)
C1705108 (UMLS CUI-1)
CL Item
unknown (3)
C0439673 (UMLS CUI-1)
Item
Left Ventricular Ejection Fraction
integer
C0428772 (UMLS CUI [1])
LVEF
Code List
Left Ventricular Ejection Fraction
CL Item
not evaluated (1)
Item
OTHER CLINICALLY SIGNIFICANT ORGAN INVOLVEMENT
integer
C0457577 (UMLS CUI [1])
OTHER CLINICALLY SIGNIFICANT ORGAN INVOLVEMENT
Code List
OTHER CLINICALLY SIGNIFICANT ORGAN INVOLVEMENT
CL Item
no (1)
C1298908 (UMLS CUI-1)
CL Item
yes (2)
C1705108 (UMLS CUI-1)
Item
CLASS
integer
C0456387 (UMLS CUI [1])
CLASS
Code List
CLASS
CL Item
No hepatomegaly (or < 3 cm), No fibrosis, Regular chelation (1)
CL Item
One or two of these conditions (2)
CL Item
Hepatomegaly (= 3 cm), Fibrosis, and Irregular chelation (3)
Item Group
ADDITIONAL TREATMENT POST-HSCT
Item
ADDITIONAL DISEASE TREATMENT
integer
C1706712 (UMLS CUI [1])
ADDITIONAL DISEASE TREATMENT
Code List
ADDITIONAL DISEASE TREATMENT
CL Item
no (1)
C1298908 (UMLS CUI-1)
CL Item
yes (2)
C1705108 (UMLS CUI-1)
Item
if ADDITIONAL DISEASE TREATMENT
integer
C1706712 (UMLS CUI [1])
ADDITIONAL DISEASE TREATMENT
Code List
if ADDITIONAL DISEASE TREATMENT
CL Item
Planned (planned before HSCT took place) (1)
CL Item
Not planned (for relapse/progression or persistent disease) (2)
Item Group
FORMS TO BE FILLED IN
Item
Type of Transplant
integer
C0559189 (UMLS CUI [1,1])
C0040739 (UMLS CUI [1,2])
Type of Transplant
Code List
Type of Transplant
CL Item
AUTOgraft (proceed to Autograft form) (AUTOgraft (proceed to Autograft form))
CL Item
ALLOgraft or Syngeneic graft (proceed to Allograft form) (ALLOgraft or Syngeneic graft (proceed to Allograft form))
CL Item
Other (contact the EBMT Central Registry for instructions) (Other (contact the EBMT Central Registry for instructions))
Type of Transplant
Item
if other Type of Transplant
integer
C0559189 (UMLS CUI [1,1])
C0040739 (UMLS CUI [1,2])
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