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13pp EBMT Haemoglobinopathy 12Hgbpthy.pdf

1 Formulaires  
GENERAL INFORMATION
Description

GENERAL INFORMATION

GENERAL INFORMATION
Description

GENERAL INFORMATION

Type de données

text

Hospital
Description

Hospital

Type de données

text

Unit
Description

Unit

Type de données

text

Name of a Contact Person
Description

Contact Person

Type de données

text

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

Telephone

Type de données

text

Alias
UMLS CUI [1]
C1515258
Fax
Description

Fax

Type de données

text

Alias
UMLS CUI [1,1]
C1549619
UMLS CUI [1,2]
C0337611
UMLS CUI [1,3]
C0030664
E-mail
Description

ContactPersonE-mailText

Type de données

text

Alias
UMLS CUI [1,1]
C1527021
UMLS CUI [1,2]
C0027361
UMLS CUI [1,3]
C0013849
UMLS CUI [1,4]
C0337611
Date of this report
Description

Date of this report

Type de données

date

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

Patient in Trial

Type de données

integer

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

Name of study / trial

Type de données

text

Patient
Description

Patient

Unique Identification Code (UIC)
Description

Identification code

Type de données

text

Alias
UMLS CUI [1]
C2348585
Hospital Unique Patient Number or Code
Description

Hospital Unique Patient Number or Code

Type de données

text

Alias
UMLS CUI [1]
C2348585
First name(s) - surname(s) (Registration will not be accepted if this item is left blank)
Description

Initials

Type de données

text

Alias
UMLS CUI [1]
C2986440
Date of birth
Description

Date of birth

Type de données

date

Alias
UMLS CUI [1]
C0421451
Sex:
Description

PatientGender

Type de données

text

Alias
UMLS CUI [1,1]
C0683312
UMLS CUI [1,2]
C0030705
UMLS CUI [1,3]
C0079399
ABO Group
Description

ABO Group

Type de données

text

Rh factor
Description

Rh factor

Type de données

integer

DISEASE
Description

DISEASE

Date of diagnosis
Description

NewCancerDiagnosisDate

Type de données

date

Alias
UMLS CUI [1,1]
C0205314
UMLS CUI [1,2]
C0006826
UMLS CUI [1,3]
C0011900
UMLS CUI [1,4]
C0011008
Check the disease for which this transplant was performed (if other diagnosis, specify)
Description

Primary Disease Diagnosis

Type de données

text

Alias
UMLS CUI [1]
C0277554
Primary Disease Diagnosis
Description

Primary Disease Diagnosis

Type de données

text

Alias
UMLS CUI [1]
C0277554
Primary Disease Diagnosis Thalassemia
Description

Primary Disease Diagnosis Thalassemia

Type de données

integer

Primary Disease Diagnosis Thalassemia
Description

if use Other thalassemia

Type de données

text

If use other diagnosis, specification
Description

Primary Disease Diagnosis

Type de données

text

Alias
UMLS CUI [1]
C0277554
PRIMARY DISEASE Diagnosis
Description

if use Compound Heterozygous States

Type de données

text

Unités de mesure
  • Sickle (ßS) %
Sickle (ßS) %
PRE-HSCT BIOLOGICAL FEATURES
Description

Molecular marker test

Type de données

integer

PRE-HSCT MAIN CLINICAL FEATURES
Description

PRE-HSCT MAIN CLINICAL FEATURES

Type de données

text

Splenomegaly
Description

Splenomegaly

Type de données

integer

Splenomegaly
Description

if use present: Spleen size

Type de données

text

Unités de mesure
  • cm under costal margin
cm under costal margin
Hepatomegaly
Description

Hepatomegaly

Type de données

text

Hepatomegaly
Description

if use Present: Liver size

Type de données

text

Unités de mesure
  • cm under costal margin
cm under costal margin
Diabetes
Description

Diabetes

Type de données

text

Diabetes
Description

if use yes

Type de données

integer

CLINICAL FEATURES AND COMPLICATIONS
Description

CLINICAL FEATURES AND COMPLICATIONS

Gonadal dysfunction
Description

Gonadal dysfunction

Type de données

text

Alias
UMLS CUI [1]
C0018050
Substitutional hormonal therapy
Description

Substitutional hormonal therapy

Type de données

text

Growth impairment
Description

Growth impairment

Type de données

text

Growth impairment
Description

Growth impairment

Type de données

text

Red blood cell immunization
Description

Red blood cell immunization

Type de données

text

Sickle nephropathy (glomerular filtration rate 30-50% predicted)
Description

Sickle nephropathy

Type de données

text

Stroke or central nervous system haemorrhage
Description

Stroke or central nervous system haemorrhage

Type de données

text

Recurrent acute chest syndrome
Description

Recurrent acute chest syndrome

Type de données

text

Impaired neuropsychologic function and abnormal Magnetic Resonance Imaging scan
Description

Impaired neuropsychologic function and abnormal Magnetic Resonance Imaging scan

Type de données

text

Bilateral proliferative retinopathy and visual impairment
Description

Bilateral proliferative retinopathy and visual impairment

Type de données

text

Osteonecrosis of multiple joints
Description

Osteonecrosis of multiple joints

Type de données

text

If Other CLINICAL ABNORMALITIES INDICATING THE SEVERITY OF THE PRIMARY DISEASE
Description

CLINICAL ABNORMALITIES INDICATING THE SEVERITY OF THE PRIMARY DISEASE

Type de données

text

If DISEASES NOT RELATED TO THE TREATMENT OF HEMOGLOBINOPATHY
Description

MAJOR DISEASES NOT RELATED TO THE TREATMENT OF HEMOGLOBINOPATHY

Type de données

text

CHELATION TREATMENT PRE-HSCT
Description

CHELATION TREATMENT PRE-HSCT

Type de données

text

If CHELATION TREATMENT PRE-HSCT
Description

Start CHELATION TREATMENT PRE-HSCT

Type de données

date

STATUS OF DISEASE AT HSCT
Description

STATUS OF DISEASE AT HSCT

Date of HSCT
Description

Date of HSCT

Type de données

date

Alias
UMLS CUI [1]
C2584899
Splenectomy
Description

Splenectomy

Type de données

text

Alias
UMLS CUI [1]
C0037995
if Splenectomy
Description

Splenectomy

Type de données

date

RBC Transfusions
Description

RBC Transfusions

Type de données

integer

if RBC Transfusions
Description

Age at transfusion (months)

Type de données

text

if RBC Transfusions
Description

Total number of RBC units transfused

Type de données

text

Enzymes
Description

Enzymes

LDH Value
Description

LDH

Type de données

float

LDH unit
Description

LDH

Type de données

float

LDH Times Upper Limit
Description

LDH

Type de données

float

LDH not evaluated
Description

LDH

Type de données

integer

AST (SGOT) Value
Description

AST (SGOT)

Type de données

float

AST (SGOT) Unit
Description

AST (SGOT)

Type de données

float

AST (SGOT) Times upper limit
Description

AST (SGOT)

Type de données

float

AST (SGOT) not evaluated
Description

AST (SGOT)

Type de données

integer

ALT (SGPT) Value
Description

ALT (SGPT)

Type de données

float

ALT (SGPT) Unit
Description

ALT (SGPT)

Type de données

float

ALT (SGPT) Times Upper Limit
Description

ALT (SGPT)

Type de données

float

ALT (SGPT) not evaluated
Description

ALT (SGPT)

Type de données

integer

Gamma GT value
Description

Gamma GT

Type de données

float

Gamma GT float
Description

Gamma GT

Type de données

integer

Gamma GT Times Upper Limit
Description

Gamma GT

Type de données

float

Gamma GT Not Evaluated
Description

Gamma GT

Type de données

integer

Albumin
Description

Albumin

Type de données

float

Alias
UMLS CUI [1]
C0201838
Albumin Not evaluated
Description

Albumin

Type de données

integer

Bilirubin Total serum bilirubin
Description

Bilirubin

Type de données

float

Unités de mesure
  • mg/dl
mg/dl
Bilirubin Direct bilirubin
Description

Bilirubin

Type de données

float

Unités de mesure
  • μmol/l
Alias
UMLS CUI [1]
C1278039
μmol/l
Bilirubin Not evaluated
Description

Bilirubin

Type de données

integer

Ferritin
Description

Ferritin

Type de données

float

Unités de mesure
  • ng/ml
ng/ml
Ferritin Not evaluated
Description

Ferritin

Type de données

float

Unités de mesure
  • ng/ml
Alias
UMLS CUI [1]
C0015879
ng/ml
Total Transferrin
Description

Total Transferrin

Type de données

float

Unités de mesure
  • mg/dl
mg/dl
Total Transferrin Not evaluated
Description

Total Transferrin

Type de données

integer

Unbounded Transferrin
Description

Unbounded Transferrin

Type de données

float

Unités de mesure
  • mg/dl
mg/dl
Unbounded Transferrin Not evaluated
Description

Unbounded Transferrin

Type de données

integer

LIVER FUNCTION
Description

LIVER FUNCTION

Evidence of hepatitis or other liver disease
Description

Evidence of hepatitis or other liver disease

Type de données

text

if Evidence of hepatitis or other liver disease
Description

Evidence of hepatitis or other liver disease

Type de données

text

if other Evidence of hepatitis or other liver disease
Description

Evidence of hepatitis or other liver disease

Type de données

text

Liver biopsy performed
Description

Liver biopsy performed

Type de données

text

RESULTS OF LIVER BIOPSY
Description

RESULTS OF LIVER BIOPSY

Hepatitis
Description

Hepatitis

Type de données

text

Siderosis
Description

Siderosis

Type de données

text

Fibrosis
Description

Fibrosis

Type de données

text

if Fibrosis Present
Description

Fibrosis

Type de données

text

CARDIAC FUNCTION
Description

CARDIAC FUNCTION

History of cardiac insufficiency:
Description

History of cardiac insufficiency

Type de données

text

if History of cardiac insufficiency (therapy)
Description

History of cardiac insufficiency:

Type de données

text

Left Ventricular Ejection Fraction
Description

LVEF

Type de données

float

Unités de mesure
  • %
Alias
UMLS CUI [1]
C0428772
%
Left ventricular not evaluated
Description

LVEF

Type de données

integer

Alias
UMLS CUI [1]
C0428772
OTHER CLINICALLY SIGNIFICANT ORGAN INVOLVEMENT
Description

OTHER CLINICALLY SIGNIFICANT ORGAN INVOLVEMENT

Type de données

text

if OTHER CLINICALLY SIGNIFICANT ORGAN INVOLVEMENT
Description

OTHER CLINICALLY SIGNIFICANT ORGAN INVOLVEMENT

Type de données

text

CLASS
Description

CLASS

Type de données

text

ADDITIONAL TREATMENT POST-HSCT
Description

ADDITIONAL TREATMENT POST-HSCT

ADDITIONAL DISEASE TREATMENT
Description

ADDITIONAL DISEASE TREATMENT

Type de données

text

if ADDITIONAL DISEASE TREATMENT
Description

ADDITIONAL DISEASE TREATMENT

Type de données

text

FORMS TO BE FILLED IN
Description

FORMS TO BE FILLED IN

Type of Transplant
Description

Type of Transplant

Type de données

text

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

Type of Transplant

Type de données

text

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13pp EBMT Haemoglobinopathy 12Hgbpthy.pdf

1 Formulaires
Name
Type
Description | Question | Decode (Coded Value)
Type de données
Alias
Item Group
GENERAL INFORMATION
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])
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])
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)
CL Item
Yes (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Name of study / trial
Item
Name of study / trial
text
Item Group
Patient
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])
PatientGender
Code List
Sex:
CL Item
Male (1)
CL Item
Female (2)
ABO Group
Item
ABO Group
text
Item
Rh factor
integer
Rh factor
Code List
Rh factor
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
Item Group
DISEASE
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])
Item
Check the disease for which this transplant was performed (if other diagnosis, specify)
text
C0277554 (UMLS CUI [1])
Primary Disease Diagnosis
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)
Item
text
C0277554 (UMLS CUI [1])
Primary Disease Diagnosis
Code List
Primary Disease 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)
Item
Primary Disease Diagnosis Thalassemia
integer
Primary Disease Diagnosis Thalassemia
Code List
Primary Disease Diagnosis Thalassemia
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
Item
PRE-HSCT BIOLOGICAL FEATURES
integer
PRE-HSCT BIOLOGICAL FEATURES Molecular marker test
Code List
PRE-HSCT BIOLOGICAL FEATURES
CL Item
Done (1)
CL Item
Not evaluated (2)
Item
PRE-HSCT MAIN CLINICAL FEATURES
text
PRE-HSCT MAIN CLINICAL FEATURES
Code List
PRE-HSCT MAIN CLINICAL FEATURES
CL Item
Splenomegaly (1)
CL Item
Hepatomegaly (2)
CL Item
Diabetes (3)
Item
Splenomegaly
integer
Splenomegaly
Code List
Splenomegaly
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not applicable (3)
Splenomegaly
Item
Splenomegaly
text
Item
Hepatomegaly
text
Hepatomegaly
Code List
Hepatomegaly
CL Item
Absent (1)
CL Item
Present (2)
hepatomegaly
Item
Hepatomegaly
text
Item
Diabetes
text
Diabetes
Code List
Diabetes
CL Item
no (1)
CL Item
yes (2)
Item
Diabetes
integer
Diabetes
Code List
Diabetes
CL Item
Insulin required occasionally (1)
CL Item
Insulin required regularly (2)
Item Group
CLINICAL FEATURES AND COMPLICATIONS
Item
Gonadal dysfunction
text
C0018050 (UMLS CUI [1])
Gonadal dysfunction
Code List
Gonadal dysfunction
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluates (3)
CL Item
Unknown (4)
Item
Substitutional hormonal therapy
text
Substitutional hormonal therapy
Code List
Substitutional hormonal therapy
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluates (3)
CL Item
Unknown (4)
Item
Growth impairment
text
Growth impairment
Code List
Growth impairment
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Item
Growth impairment
text
Growth impairment
Code List
Growth impairment
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Item
Red blood cell immunization
text
Red blood cell immunization
Code List
Red blood cell immunization
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Item
Sickle nephropathy (glomerular filtration rate 30-50% predicted)
text
Sickle nephropathy
Code List
Sickle nephropathy (glomerular filtration rate 30-50% predicted)
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Item
Stroke or central nervous system haemorrhage
text
Stroke or central nervous system haemorrhage
Code List
Stroke or central nervous system haemorrhage
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
Item
Recurrent acute chest syndrome
text
Recurrent acute chest syndrome
Code List
Recurrent acute chest syndrome
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
Impaired neuropsychologic function and abnormal Magnetic Resonance Imaging scan
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
Bilateral proliferative retinopathy and visual impairment
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)
Item
Osteonecrosis of multiple joints
text
Osteonecrosis of multiple joints
Code List
Osteonecrosis of multiple joints
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
Item
CHELATION TREATMENT PRE-HSCT
text
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
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
if Splenectomy
date
Item
RBC Transfusions
integer
RBC Transfusions
Code List
RBC Transfusions
CL Item
no (1)
CL Item
yes (2)
RBC Transfusions
Item
if RBC Transfusions
text
RBC Transfusions
Item
if RBC Transfusions
text
Item Group
Enzymes
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
Item Group
LIVER FUNCTION
Item
Evidence of hepatitis or other liver disease
text
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
if Evidence of hepatitis or other liver disease
text
Evidence of hepatitis or other liver disease
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
Item
Liver biopsy performed
text
Liver biopsy performed
Code List
Liver biopsy performed
CL Item
no (1)
CL Item
yes (2)
Item Group
RESULTS OF LIVER BIOPSY
Item
Hepatitis
text
Hepatitis
Code List
Hepatitis
CL Item
Chronic persistent hepatitis (1)
CL Item
Chronic active hepatitis (2)
CL Item
Absent (3)
Item
Siderosis
text
Siderosis
Code List
Siderosis
CL Item
Present (1)
CL Item
Mild (2)
CL Item
Moderate (3)
CL Item
Severe (4)
CL Item
Absent (5)
Item
Fibrosis
text
Fibrosis
Code List
Fibrosis
CL Item
Present (1)
CL Item
Absent (2)
Item
if Fibrosis Present
text
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:
text
History of cardiac insufficiency
Code List
History of cardiac insufficiency:
CL Item
no (1)
CL Item
yes (2)
Item
if History of cardiac insufficiency (therapy)
text
History of cardiac insufficiency:
Code List
if History of cardiac insufficiency (therapy)
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
OTHER CLINICALLY SIGNIFICANT ORGAN INVOLVEMENT
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
Item
CLASS
text
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
text
ADDITIONAL DISEASE TREATMENT
Code List
ADDITIONAL DISEASE TREATMENT
CL Item
no (1)
CL Item
yes (2)
Item
if ADDITIONAL DISEASE TREATMENT
text
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
text
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
text
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