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Erreur:
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
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Mots-clés
Versions (4)
- 18/03/2016 18/03/2016 -
- 26/07/2016 26/07/2016 -
- 15/03/2021 15/03/2021 - Dr. rer. medic Philipp Neuhaus
- 20/09/2021 20/09/2021 -
Téléchargé le
15 mars 2021
DOI
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Licence
Creative Commons BY-NC 3.0
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EBMT Haemoglobinopathy General Information
EBMT Haemoglobinopathy General Information
- StudyEvent: ODM
Similar models
EBMT Haemoglobinopathy General Information
- StudyEvent: ODM
Name
Type
Description | Question | Decode (Coded Value)
Type de données
Alias
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])
CL Item
No (1)
C1298908 (UMLS CUI-1)
CL Item
Yes (2)
C1705108 (UMLS CUI-1)
CL Item
Not evaluated (3)
C3846720 (UMLS CUI-1)
CL Item
Unknown (4)
C0439673 (UMLS CUI-1)
Name of study / trial
Item
Name of study / trial
integer
C0008976 (UMLS CUI [1])
Unique Identification Code
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])
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])
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
Date of diagnosis
Item
Date of diagnosis
date
C2316983 (UMLS CUI [1])
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)
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)
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])
C0332152 (UMLS CUI [1,2])
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])
C3554759 (UMLS CUI [1,2])
CL Item
Splenomegaly (1)
C0038002 (UMLS CUI-1)
CL Item
Hepatomegaly (2)
C0019209 (UMLS CUI-1)
CL Item
Diabetes (3)
C0011849 (UMLS CUI-1)
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])
C0437634 (UMLS CUI [1,2])
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])
C2363138 (UMLS CUI [1,2])
CL Item
no (1)
CL Item
yes (2)
CL Item
Insulin required occasionally (1)
C3278783 (UMLS CUI-1)
CL Item
Insulin required regularly (2)
C4020137 (UMLS CUI-1)
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])
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)
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])
C0014792 (UMLS CUI [1,2])
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])
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])
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)
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])
C0024485 (UMLS CUI [2])
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])
C3665347 (UMLS CUI [2])
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)
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])
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])
C3173309 (UMLS CUI [1,2])
Date of HSCT
Item
Date of HSCT
date
C2584899 (UMLS CUI [1])
CL Item
no (1)
CL Item
yes (2)
Splenectomy
Item
Date of Splenectomy
date
C0037995 (UMLS CUI [1,1])
C2584899 (UMLS CUI [1,2])
C2584899 (UMLS CUI [1,2])
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])
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])
C1317795 (UMLS CUI [1,2])
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])
C2827740 (UMLS CUI [1,2])
LDH not evaluated
Item
LDH not evaluated
integer
C0202113 (UMLS CUI [1,1])
C0220825 (UMLS CUI [1,2])
C0220825 (UMLS CUI [1,2])
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)
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)
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)
CL Item
Not evaluated (1)
C3846720 (UMLS CUI-1)
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)
CL Item
Not evaluated (1)
CL Item
Not evaluated (1)
Unbounded Transferrin
Item
Unbounded Transferrin
integer
C0202105 (UMLS CUI [1])
Item
Evidence of hepatitis or other liver disease
integer
C0019158 (UMLS CUI [1])
C0023895 (UMLS CUI [2])
C0023895 (UMLS CUI [2])
CL Item
no (1)
CL Item
yes (2)
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)
CL Item
no (1)
C1298908 (UMLS CUI-1)
CL Item
yes (2)
C1705108 (UMLS CUI-1)
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)
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)
CL Item
Present (1)
C0150312 (UMLS CUI-1)
CL Item
Absent (2)
C0332197 (UMLS CUI-1)
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)
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])
C0018802 (UMLS CUI [1,2])
CL Item
no (1)
C1298908 (UMLS CUI-1)
CL Item
yes (2)
C1705108 (UMLS CUI-1)
CL Item
unknown (3)
C0439673 (UMLS CUI-1)
CL Item
not evaluated (1)
Item
OTHER CLINICALLY SIGNIFICANT ORGAN INVOLVEMENT
integer
C0457577 (UMLS CUI [1])
Code List
OTHER CLINICALLY SIGNIFICANT ORGAN INVOLVEMENT
CL Item
no (1)
C1298908 (UMLS CUI-1)
CL Item
yes (2)
C1705108 (UMLS CUI-1)
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)
CL Item
no (1)
C1298908 (UMLS CUI-1)
CL Item
yes (2)
C1705108 (UMLS CUI-1)
CL Item
Planned (planned before HSCT took place) (1)
CL Item
Not planned (for relapse/progression or persistent disease) (2)
Item
Type of Transplant
integer
C0559189 (UMLS CUI [1,1])
C0040739 (UMLS CUI [1,2])
C0040739 (UMLS CUI [1,2])
CL Item
AUTOgraft (proceed to Autograft form) (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])
C0040739 (UMLS CUI [1,2])
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