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ID
13955
Description
Keywords
Versions (4)
- 3/18/16 3/18/16 -
- 7/26/16 7/26/16 -
- 3/15/21 3/15/21 - Dr. rer. medic Philipp Neuhaus
- 9/20/21 9/20/21 -
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March 18, 2016
DOI
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License
Creative Commons BY-NC 3.0
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EBMT Haemoglobinopathy GENERAL INFORMATION
13pp EBMT Haemoglobinopathy 12Hgbpthy.pdf
- StudyEvent: ODM
Similar models
13pp EBMT Haemoglobinopathy 12Hgbpthy.pdf
- StudyEvent: ODM
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
GENERAL INFORMATION
Item
GENERAL INFORMATION
text
Hospital
Item
Hospital
text
Unit
Item
Unit
text
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
text
C1549619 (UMLS CUI [1,1])
C0337611 (UMLS CUI [1,2])
C0030664 (UMLS CUI [1,3])
C0337611 (UMLS CUI [1,2])
C0030664 (UMLS CUI [1,3])
ContactPersonE-mailText
Item
E-mail
text
C1527021 (UMLS CUI [1,1])
C0027361 (UMLS CUI [1,2])
C0013849 (UMLS CUI [1,3])
C0337611 (UMLS CUI [1,4])
C0027361 (UMLS CUI [1,2])
C0013849 (UMLS CUI [1,3])
C0337611 (UMLS CUI [1,4])
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)
CL Item
Yes (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Name of study / trial
Item
Name of study / trial
text
Identification code
Item
Unique Identification Code (UIC)
text
C2348585 (UMLS CUI [1])
Hospital Unique Patient Number or Code
Item
Hospital Unique Patient Number or Code
text
C2348585 (UMLS CUI [1])
Initials
Item
First name(s) - surname(s) (Registration will not be accepted if this item is left blank)
text
C2986440 (UMLS CUI [1])
Date of birth
Item
Date of birth
date
C0421451 (UMLS CUI [1])
Item
Sex:
text
C0683312 (UMLS CUI [1,1])
C0030705 (UMLS CUI [1,2])
C0079399 (UMLS CUI [1,3])
C0030705 (UMLS CUI [1,2])
C0079399 (UMLS CUI [1,3])
CL Item
Male (1)
CL Item
Female (2)
ABO Group
Item
ABO Group
text
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
NewCancerDiagnosisDate
Item
Date of diagnosis
date
C0205314 (UMLS CUI [1,1])
C0006826 (UMLS CUI [1,2])
C0011900 (UMLS CUI [1,3])
C0011008 (UMLS CUI [1,4])
C0006826 (UMLS CUI [1,2])
C0011900 (UMLS CUI [1,3])
C0011008 (UMLS CUI [1,4])
Item
Check the disease for which this transplant was performed (if other diagnosis, specify)
text
C0277554 (UMLS CUI [1])
Code List
Check the disease for which this transplant was performed (if other diagnosis, specify)
CL Item
Acute Leukaemia (Acute Leukaemia)
CL Item
Myelogenous (AML) (Myelogenous (AML))
CL Item
Lymphoblastic (ALL) (Lymphoblastic (ALL))
CL Item
Secondary Acute Leukaemia (Do not use if transformed from MDS/ MPN) (Secondary Acute Leukaemia (Do not use if transformed from MDS/ MPN))
CL Item
Chronic Leukaemia (Chronic Leukaemia)
CL Item
Chronic Myeloid Leukaemia (CML) (Chronic Myeloid Leukaemia (CML))
CL Item
Chronic Lymphocytic Leukaemia (CLL) (Chronic Lymphocytic Leukaemia (CLL))
CL Item
Lymphoma (Lymphoma)
CL Item
Non Hodgkin (Non Hodgkin)
CL Item
Hodgkin´s Disease (Hodgkin´s Disease)
CL Item
Myeloma/ Plasma Cell Disorder (Myeloma/ Plasma Cell Disorder)
CL Item
Solid Tumor (Solid Tumor)
CL Item
Myelodysplastic Syndromes (Myelodysplastic Syndromes)
CL Item
MDS (MDS)
CL Item
MD/ MPN (MD/ MPN)
CL Item
Myeloproliferative neoplasm (Myeloproliferative neoplasm)
CL Item
Bone marrow failure including Aplastic Anaemia (Bone marrow failure including Aplastic Anaemia)
CL Item
Inherited disorders (Inherited disorders)
CL Item
Primary immune deficiencies (Primary immune deficiencies)
CL Item
Metabolic disorders (Metabolic disorders)
CL Item
Histocytic Disorders (Histocytic Disorders)
CL Item
Autoimmune Disease (Autoimmune Disease)
CL Item
Juvenile Idiopathic Arthritis (Juvenile Idiopathic Arthritis)
CL Item
Multiple Sclerosis (Multiple Sclerosis)
CL Item
Systemic Lupus (Systemic Lupus)
CL Item
Systemic Sclerosis (Systemic Sclerosis)
CL Item
Haemoglobinopathy (Haemoglobinopathy)
CL Item
Other diagnosis (Other diagnosis)
CL Item
Thalassemia (1)
CL Item
Other thalassemia (2)
CL Item
Sickle cell anaemia (3)
CL Item
Compound Heterozygous States (4)
CL Item
Other, specify (5)
CL Item
ß° (1)
CL Item
ß+ (2)
Primary Disease Diagnosis Thalassemia
Item
Primary Disease Diagnosis Thalassemia
text
Primary Disease Diagnosis
Item
If use other diagnosis, specification
text
C0277554 (UMLS CUI [1])
PRIMARY DISEASE Diagnosis
Item
PRIMARY DISEASE Diagnosis
text
CL Item
Done (1)
CL Item
Not evaluated (2)
CL Item
Splenomegaly (1)
CL Item
Hepatomegaly (2)
CL Item
Diabetes (3)
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not applicable (3)
Splenomegaly
Item
Splenomegaly
text
CL Item
Absent (1)
CL Item
Present (2)
hepatomegaly
Item
Hepatomegaly
text
CL Item
no (1)
CL Item
yes (2)
CL Item
Insulin required occasionally (1)
CL Item
Insulin required regularly (2)
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluates (3)
CL Item
Unknown (4)
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluates (3)
CL Item
Unknown (4)
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Item
Impaired neuropsychologic function and abnormal Magnetic Resonance Imaging scan
text
Code List
Impaired neuropsychologic function and abnormal Magnetic Resonance Imaging scan
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Item
Bilateral proliferative retinopathy and visual impairment
text
Code List
Bilateral proliferative retinopathy and visual impairment
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CLINICAL ABNORMALITIES INDICATING THE SEVERITY OF THE PRIMARY DISEASE
Item
If Other CLINICAL ABNORMALITIES INDICATING THE SEVERITY OF THE PRIMARY DISEASE
text
MAJOR DISEASES NOT RELATED TO THE TREATMENT OF HEMOGLOBINOPATHY
Item
If DISEASES NOT RELATED TO THE TREATMENT OF HEMOGLOBINOPATHY
text
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
Date of HSCT
Item
Date of HSCT
date
C2584899 (UMLS CUI [1])
CL Item
no (1)
CL Item
yes (2)
Splenectomy
Item
if Splenectomy
date
CL Item
no (1)
CL Item
yes (2)
RBC Transfusions
Item
if RBC Transfusions
text
RBC Transfusions
Item
if RBC Transfusions
text
LDH
Item
LDH Value
float
LDH
Item
LDH unit
float
LDH
Item
LDH Times Upper Limit
float
LDH
Item
LDH not evaluated
integer
AST (SGOT)
Item
AST (SGOT) Value
float
AST (SGOT)
Item
AST (SGOT) Unit
float
AST (SGOT)
Item
AST (SGOT) Times upper limit
float
AST (SGOT)
Item
AST (SGOT) not evaluated
integer
ALT (SGPT)
Item
ALT (SGPT) Value
float
ALT (SGPT)
Item
ALT (SGPT) Unit
float
ALT (SGPT)
Item
ALT (SGPT) Times Upper Limit
float
ALT (SGPT)
Item
ALT (SGPT) not evaluated
integer
Gamma GT
Item
Gamma GT value
float
Gamma GT
Item
Gamma GT float
integer
Gamma GT
Item
Gamma GT Times Upper Limit
float
Gamma GT
Item
Gamma GT Not Evaluated
integer
Albumin
Item
Albumin
float
C0201838 (UMLS CUI [1])
Albumin
Item
Albumin Not evaluated
integer
Bilirubin
Item
Bilirubin Total serum bilirubin
float
Bilirubin
Item
Bilirubin Direct bilirubin
float
C1278039 (UMLS CUI [1])
Bilirubin
Item
Bilirubin Not evaluated
integer
Ferritin
Item
Ferritin
float
Ferritin
Item
Ferritin Not evaluated
float
C0015879 (UMLS CUI [1])
Total Transferrin
Item
Total Transferrin
float
Total Transferrin
Item
Total Transferrin Not evaluated
integer
Unbounded Transferrin
Item
Unbounded Transferrin
float
Unbounded Transferrin
Item
Unbounded Transferrin Not evaluated
integer
CL Item
no (1)
CL Item
yes (2)
Item
if Evidence of hepatitis or other liver disease
text
Code List
if Evidence of hepatitis or other liver disease
CL Item
Hepatitis B (1)
CL Item
Hepatitis C (2)
CL Item
Hepatitis unspecified (3)
CL Item
other (4)
Evidence of hepatitis or other liver disease
Item
if other Evidence of hepatitis or other liver disease
text
CL Item
no (1)
CL Item
yes (2)
CL Item
Chronic persistent hepatitis (1)
CL Item
Chronic active hepatitis (2)
CL Item
Absent (3)
CL Item
Present (1)
CL Item
Mild (2)
CL Item
Moderate (3)
CL Item
Severe (4)
CL Item
Absent (5)
CL Item
Present (1)
CL Item
Absent (2)
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)
CL Item
no (1)
CL Item
yes (2)
CL Item
unknown (3)
LVEF
Item
Left Ventricular Ejection Fraction
float
C0428772 (UMLS CUI [1])
LVEF
Item
Left ventricular not evaluated
integer
C0428772 (UMLS CUI [1])
Item
OTHER CLINICALLY SIGNIFICANT ORGAN INVOLVEMENT
text
Code List
OTHER CLINICALLY SIGNIFICANT ORGAN INVOLVEMENT
CL Item
no (1)
CL Item
yes (2)
OTHER CLINICALLY SIGNIFICANT ORGAN INVOLVEMENT
Item
if OTHER CLINICALLY SIGNIFICANT ORGAN INVOLVEMENT
text
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)
CL Item
yes (2)
CL Item
Planned (planned before HSCT took place) (1)
CL Item
Not planned (for relapse/progression or persistent disease) (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
text