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ID

42035

Description

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

Keywords

Versions (4)
  1. 3/18/16 3/18/16 -
  2. 7/26/16 7/26/16 -
  3. 3/15/21 3/15/21 - Dr. rer. medic Philipp Neuhaus
  4. 9/20/21 9/20/21 -
Uploaded on

March 15, 2021

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License

Creative Commons BY-NC 3.0
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    EBMT Haemoglobinopathy General Information

    English

    EBMT Haemoglobinopathy General Information

    1 forms  
    GENERAL INFORMATION
    Description

    GENERAL INFORMATION

    GENERAL INFORMATION
    Description

    GENERAL INFORMATION

    Data type

    text

    Alias
    UMLS CUI [1]
    C1508263
    Hospital
    Description

    Hospital

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0019994
    Unit
    Description

    Unit

    Data type

    integer

    Alias
    UMLS CUI [1]
    C1519795
    Name of a 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]
    C1549619
    E-mail
    Description

    ContactPersonE-mailText

    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
    Patient
    Description

    Patient

    Unique Identification Code (UIC)
    Description

    Unique Identification Code

    Data type

    integer

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

    Patient Number

    Data type

    integer

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

    Initials

    Data type

    integer

    Alias
    UMLS CUI [1]
    C2986440
    Date of birth
    Description

    Date of birth

    Data type

    date

    Alias
    UMLS CUI [1]
    C0421451
    Sex
    Description

    Patient Gender

    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
    Primary Disease Diagnosis
    Description

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

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0277554
    Disease Diagnosis
    Description

    Disease Diagnosis

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0011900
    Typ of Thalassemia
    Description

    Typ of Thalassemia

    Data type

    integer

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

    Primary Disease Diagnosis

    Data type

    text

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

    if use Compound Heterozygous States

    Data type

    integer

    Measurement units
    • Sickle (ßS) %
    Alias
    UMLS CUI [1]
    C0002895
    Sickle (ßS) %
    PRE-HSCT BIOLOGICAL FEATURES
    Description

    Molecular marker test

    Data type

    integer

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

    PRE-HSCT MAIN CLINICAL FEATURES

    Data type

    integer

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

    Splenomegaly

    Data type

    integer

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

    if use present: Spleen size

    Data type

    integer

    Measurement units
    • cm under costal margin
    Alias
    UMLS CUI [1,1]
    C0038002
    UMLS CUI [1,2]
    C0437634
    cm under costal margin
    Hepatomegaly
    Description

    Hepatomegaly

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0019209
    Hepatomegaly
    Description

    if use Present: Liver size

    Data type

    integer

    Measurement units
    • cm under costal margin
    Alias
    UMLS CUI [1,1]
    C1856554
    UMLS CUI [1,2]
    C2363138
    cm under costal margin
    Diabetes
    Description

    Diabetes

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0011849
    Diabetes
    Description

    if use yes

    Data type

    integer

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

    CLINICAL FEATURES AND COMPLICATIONS

    Gonadal dysfunction
    Description

    Gonadal dysfunction

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0018050
    Substitutional hormonal therapy
    Description

    Substitutional hormonal therapy

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0279025
    Growth impairment
    Description

    Growth impairment

    Data type

    integer

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

    Red blood cell immunization

    Data type

    integer

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

    Sickle nephropathy

    Data type

    integer

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

    Central nervous system haemorrhage

    Data type

    integer

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

    Recurrent acute chest syndrome

    Data type

    integer

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

    Impaired neuropsychologic function and abnormal Magnetic Resonance Imaging scan

    Data type

    integer

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

    Bilateral proliferative retinopathy and visual impairment

    Data type

    integer

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

    Osteonecrosis

    Data type

    integer

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

    CLINICAL ABNORMALITIES INDICATING THE SEVERITY OF THE PRIMARY DISEASE

    Data type

    integer

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

    MAJOR DISEASES NOT RELATED TO THE TREATMENT OF HEMOGLOBINOPATHY

    Data type

    integer

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

    CHELATION TREATMENT PRE-HSCT

    Data type

    integer

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

    Start CHELATION TREATMENT PRE-HSCT

    Data type

    date

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

    STATUS OF DISEASE AT HSCT

    Date of HSCT
    Description

    Date of HSCT

    Data type

    date

    Alias
    UMLS CUI [1]
    C2584899
    Splenectomy
    Description

    Splenectomy

    Data type

    text

    Alias
    UMLS CUI [1]
    C0037995
    Date of Splenectomy
    Description

    Splenectomy

    Data type

    date

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

    RBC Transfusions

    Data type

    integer

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

    if RBC Transfusions: Age at transfusion (months)

    Data type

    integer

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

    Total number of RBC units transfused

    Data type

    integer

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

    Enzymes

    LDH Value
    Description

    LDH

    Data type

    float

    Alias
    UMLS CUI [1]
    C0202113
    LDH unit
    Description

    LDH

    Data type

    float

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

    LDH Times Upper Limit

    Data type

    float

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

    LDH not evaluated

    Data type

    integer

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

    AST (SGOT)

    Data type

    integer

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

    ALT (SGPT)

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0201836
    Gamma GT
    Description

    Gamma GT

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0202035
    Albumin
    Description

    Albumin

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0201838
    Bilirubin
    Description

    Bilirubin

    Data type

    integer

    Measurement units
    • mg/dl
    Alias
    UMLS CUI [1]
    C1278039
    Ferritin
    Description

    Ferritin

    Data type

    integer

    Measurement units
    • ng/ml
    Alias
    UMLS CUI [1]
    C0015879
    Total Transferrin
    Description

    Transferrin

    Data type

    integer

    Measurement units
    • mg/dl
    Alias
    UMLS CUI [1]
    C0202105
    Unbounded Transferrin
    Description

    Unbounded Transferrin

    Data type

    integer

    Measurement units
    • mg/dl
    Alias
    UMLS CUI [1]
    C0202105
    mg/dl
    LIVER FUNCTION
    Description

    LIVER FUNCTION

    Evidence of hepatitis or other liver disease
    Description

    Evidence of hepatitis or other liver disease

    Data type

    integer

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

    Types of Hepatitis

    Data type

    integer

    Liver biopsy performed
    Description

    Liver biopsy

    Data type

    integer

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

    RESULTS OF LIVER BIOPSY

    Hepatitis
    Description

    Hepatitis

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0019158
    Siderosis
    Description

    Siderosis

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0037061
    Fibrosis
    Description

    Fibrosis

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0016059
    if Fibrosis Present
    Description

    if Fibrosis Present

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0016059
    CARDIAC FUNCTION
    Description

    CARDIAC FUNCTION

    History of cardiac insufficiency:
    Description

    cardiac insufficiency

    Data type

    integer

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

    if History of cardiac insufficiency: Type of therapy

    Data type

    integer

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

    LVEF

    Data type

    integer

    Measurement units
    • %
    Alias
    UMLS CUI [1]
    C0428772
    OTHER CLINICALLY SIGNIFICANT ORGAN INVOLVEMENT
    Description

    ORGAN INVOLVEMENT

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0457577
    CLASS
    Description

    CLASS

    Data type

    integer

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

    ADDITIONAL TREATMENT POST-HSCT

    ADDITIONAL DISEASE TREATMENT
    Description

    ADDITIONAL DISEASE TREATMENT

    Data type

    integer

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

    ADDITIONAL DISEASE TREATMENT

    Data type

    integer

    Alias
    UMLS CUI [1]
    C1706712
    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
    Description

    Type of Transplant

    Data type

    integer

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

    EBMT Haemoglobinopathy General Information

    1 forms
    Name
    Type
    Description | Question | Decode (Coded Value)
    Data type
    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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