Modell Kommentare :

Hier können Sie das Modell kommentieren. Über die Sprechblasen an den Itemgruppen und Items können Sie diese spezifisch kommentieren.

Itemgroup Kommentare für :

Item Kommentare für :

Um Formulare herunterzuladen müssen Sie angemeldet sein. Bitte loggen Sie sich ein oder registrieren Sie sich kostenlos.

19pp General Info EBMT Aplastic Anemia 06AA

19pp General Info EBMT Aplastic Anemia 06AA

General Information
Beschreibung

General Information

Alias
UMLS CUI-1
C1508263
EBMT Centre Identification Code (CIC)
Beschreibung

EBMT Centre Identification Code (CIC)

Datentyp

text

Alias
UMLS CUI [1]
C2348585
Name of the hospital
Beschreibung

Hospital

Datentyp

text

Alias
UMLS CUI [1]
C0019994
Unit
Beschreibung

Unit

Datentyp

text

Name of contact person
Beschreibung

Contact person

Datentyp

text

Alias
UMLS CUI [1]
C0337611
Telephone number
Beschreibung

Telephone

Datentyp

integer

Alias
UMLS CUI [1]
C1515258
Fax
Beschreibung

ContactPersonFaxNumber

Datentyp

text

Alias
UMLS CUI [1,1]
C0027361
UMLS CUI [1,2]
C0337611
UMLS CUI [1,3]
C0085205
UMLS CUI [1,4]
C0237753
E-mail
Beschreibung

ContactPersonE-mailText

Datentyp

text

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

Date of this report

Datentyp

date

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

Patient following national / international study / trial

Datentyp

integer

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

Name of study / trial

Datentyp

text

Alias
UMLS CUI [1]
C0008976
GENERAL INFORMATION
Beschreibung

GENERAL INFORMATION

To be entered only if patient previously reported
Beschreibung

Unique Identification Code (UIC)

Datentyp

text

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

Hospital Unique Patient Number or Code

Datentyp

text

Alias
UMLS CUI [1]
C1827636
First name(s)_surname(s)
Beschreibung

Initials

Datentyp

text

Alias
UMLS CUI [1]
C2986440
Date of birth
Beschreibung

Date of birth

Datentyp

date

Alias
UMLS CUI [1]
C0421451
Sex
Beschreibung

Sex

Datentyp

text

Alias
UMLS CUI [1]
C0079399
ABO Group
Beschreibung

ABO Group

Datentyp

integer

Alias
UMLS CUI [1]
C0000778
Rh factor
Beschreibung

Rh factor

Datentyp

integer

Alias
UMLS CUI [1]
C0035403
GENERAL INFORMATION
Beschreibung

GENERAL INFORMATION

Date of diagnosis
Beschreibung

Diagnose-Datum

Datentyp

date

Alias
UMLS CUI [1,1]
C2316983
UMLS CUI [1,2]
C1274082
Check the disease for which this transplant was performed
Beschreibung

Primary Disease Diagnosis

Datentyp

text

Alias
UMLS CUI [1]
C0277554
BONE MARROW FAILURE SYNDROME (INCLUDING APLASTIC ANAEMIA)
Beschreibung

BONE MARROW FAILURE SYNDROME (INCLUDING APLASTIC ANAEMIA)

TYPE OF TREATMENT BEING REGISTERED WITH THIS FORM If patients have undergone immunosuppression prior to HSCT tick both boxes
Beschreibung

TYPE OF TREATMENT BEING REGISTERED WITH THIS FORM

Datentyp

text

SUBCLASSIFICATION
Beschreibung

SUBCLASSIFICATION

Acquired
Beschreibung

Acquired

Datentyp

boolean

Aplastic anaemia
Beschreibung

Aplastic anaemia

Datentyp

text

Pure red cell aplasia (non constitutional PRCA)
Beschreibung

Pure red cell aplasia (non constitutional PRCA)

Datentyp

boolean

Paroxysmal nocturnal haemoglobinuria (PNH)
Beschreibung

Paroxysmal nocturnal haemoglobinuria (PNH)

Datentyp

boolean

Haemolytic
Beschreibung

Haemolytic

Datentyp

boolean

Aplastic
Beschreibung

Aplastic

Datentyp

boolean

Thrombotic
Beschreibung

Thrombotic

Datentyp

boolean

if other presentation, please specify
Beschreibung

Other

Datentyp

text

Pure white cell aplasia
Beschreibung

Pure white cell aplasia

Datentyp

boolean

Amegakaryocytic thrombocytopenia (non constitutional)
Beschreibung

Amegakaryocytic thrombocytopenia (non constitutional)

Datentyp

boolean

if other, please specify
Beschreibung

Other

Datentyp

text

Genetic
Beschreibung

Genetic

Datentyp

boolean

Fanconi
Beschreibung

Fanconi

Datentyp

boolean

FANC complementation group
Beschreibung

FANC complementation group

Datentyp

text

Diamond-Blackfan (congenital / constitutional PRCA)
Beschreibung

Diamond-Blackfan (congenital / constitutional PRCA)

Datentyp

boolean

Shwachman-Diamond Syndrome
Beschreibung

Shwachman-Diamond Syndrome

Datentyp

boolean

Dyserythropoietic Anaemia
Beschreibung

Dyserythropoietic Anaemia

Datentyp

boolean

Dyskeratosis congenita
Beschreibung

Dyskeratosis congenita

Datentyp

boolean

Amegakaryocytic thrombocytopaenia (constitutional)
Beschreibung

Amegakaryocytic thrombocytopaenia (constitutional)

Datentyp

boolean

if Other, please specify
Beschreibung

Other

Datentyp

text

ETIOLOGY
Beschreibung

ETIOLOGY

Datentyp

text

CYTOGENETICS
Beschreibung

CYTOGENETICS

Chromosome analysis
Beschreibung

Chromosome analysis

Datentyp

text

Alias
UMLS CUI [1]
C0200867
If done: Technique used
Beschreibung

If done: Technique used

Datentyp

text

Number of metaphases with anomalies
Beschreibung

Number of metaphases with anomalies

Datentyp

text

number of metaphases examined
Beschreibung

number of metaphases examined

Datentyp

text

trisomy 8
Beschreibung

trisomy 8

Datentyp

integer

Alias
UMLS CUI [1]
C0432412
If abnormal, indicate abnormalities found
Beschreibung

trisomy 3 (for Fanconi)

Datentyp

text

Other or associated abnormalities (specify)
Beschreibung

Other or associated abnormalities (specify)

Datentyp

text

Chromosomal breakage test (for Fanconi)
Beschreibung

Chromosomal breakage test

Datentyp

text

HAEMATOLOGICAL VALUES
Beschreibung

HAEMATOLOGICAL VALUES

Haemoglobin
Beschreibung

Haemoglobin

Datentyp

float

Maßeinheiten
  • g/dL
Alias
UMLS CUI [1]
C0019046
g/dL
Platelet count
Beschreibung

Platelets

Datentyp

float

Alias
UMLS CUI [1]
C0005821
Neutrophils
Beschreibung

Neutrophils

Datentyp

integer

Alias
UMLS CUI [1]
C0948762
Reticulocytes
Beschreibung

Reticulocytes

Datentyp

float

Ferritin
Beschreibung

Ferritin

Datentyp

float

Alias
UMLS CUI [1]
C0373607
Hemoglobin
Beschreibung

Haemoglobin

Datentyp

integer

Alias
UMLS CUI [1]
C0518015
Platelets
Beschreibung

Platelets

Datentyp

integer

COMPLICATIONS
Beschreibung

COMPLICATIONS

Haemorrhages
Beschreibung

Haemorrhages

Datentyp

text

Resistance to random platelets
Beschreibung

Resistance to random platelets

Datentyp

text

Systemic infection
Beschreibung

Systemic infection

Datentyp

text

PNH TESTS
Beschreibung

PNH TESTS

Date of PNH test
Beschreibung

Date of PNH test

Datentyp

date

PNH diagnostics by flow cytometry
Beschreibung

PNH diagnostics by flow cytometry

Datentyp

text

Size of the PNH clone in %
Beschreibung

Size of the PNH

Datentyp

text

Maßeinheiten
  • %
%
Flow cytometry assessment done on
Beschreibung

Flow cytometry assessment done on

Datentyp

text

If other, please specify
Beschreibung

Flow cytometry assessment done on

Datentyp

text

PNH diagnostics by other test, specify (if type of test unknown, write “unknown” here)
Beschreibung

PNH diagnostics by other test

Datentyp

text

PNH diagnostics by other test
Beschreibung

PNH diagnostics by other test

Datentyp

text

Clinical manifestations of PNH
Beschreibung

Clinical manifestations of PNH

Datentyp

boolean

FIRST IMMUNOSUPPRESSIVE TREATMENT EPISODE
Beschreibung

FIRST IMMUNOSUPPRESSIVE TREATMENT EPISODE

WAS THE PATIENT TREATED BEFORE THE HSCT PROCEDURE?
Beschreibung

WAS THE PATIENT TREATED BEFORE THE HSCT PROCEDURE?

Datentyp

integer

Date treatment started
Beschreibung

FIRST TREATMENT EPISODE FOR THIS REGISTRATION

Datentyp

date

SEQUENTIAL NUMBER OF THIS TREATMENT EPISODE (Other treatment episodes can have been registered for this patient with previous data submissions)
Beschreibung

SEQUENTIAL NUMBER OF THIS TREATMENT EPISODE

Datentyp

text

IF 1ST TREATMENT EPISODE FOR THE PATIENT EVER
Beschreibung

IF 1ST TREATMENT EPISODE FOR THE PATIENT EVER

RBC
Beschreibung

NUMBER OF TRANSFUSIONS BEFORE HSCT

Datentyp

integer

Alias
UMLS CUI [1]
C0014772
RBC irradiated
Beschreibung

RBC irradiated

Datentyp

text

Platelets
Beschreibung

Platelets

Datentyp

integer

Alias
UMLS CUI [1]
C0005821
Platelets irradiated
Beschreibung

Platelets irradiated

Datentyp

text

IF PATIENT HAS BEEN TREATED BEFORE
Beschreibung

IF PATIENT HAS BEEN TREATED BEFORE

Haemoglobin
Beschreibung

Haemoglobin

Datentyp

float

Alias
UMLS CUI [1]
C0019046
Haemoglobin
Beschreibung

Haemoglobin

Datentyp

text

Platelet count
Beschreibung

Platelets

Datentyp

float

Maßeinheiten
  • 1000/uL
Alias
UMLS CUI [1]
C0005821
1000/uL
Platelets
Beschreibung

Platelets

Datentyp

text

Neutrophils
Beschreibung

Neutrophils

Datentyp

text

Reticulocytes
Beschreibung

Reticulocytes

Datentyp

float

Ferritin
Beschreibung

Ferritin

Datentyp

float

Alias
UMLS CUI [1]
C0373607
REASON FOR THIS TREATMENT
Beschreibung

REASON FOR THIS TREATMENT

Datentyp

text

if other, please specify
Beschreibung

REASON FOR THIS TREATMENT

Datentyp

text

Medication
Beschreibung

Medication

Datentyp

text

If other, please specify
Beschreibung

Medication

Datentyp

text

RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
Beschreibung

RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE

Datentyp

text

if other, please specify
Beschreibung

RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE

Datentyp

text

Date response evaluated
Beschreibung

Date response evaluated

Datentyp

date

SECONDARY CLONAL COMPLICATIONS
Beschreibung

SECONDARY CLONAL COMPLICATIONS

Datentyp

boolean

Date of diagnosis of MDS (if applicable)
Beschreibung

Date of diagnosis of MDS

Datentyp

date

MDS WHO classification
Beschreibung

MDS WHO classification

Datentyp

text

Date of diagnosis of PNH (if applicable)
Beschreibung

Date of diagnosis of PNH

Datentyp

date

Size of the PNH clone
Beschreibung

Size of the PNH clone

Datentyp

float

Maßeinheiten
  • %
%
Flow cytometry assessment done on
Beschreibung

Flow cytometry assessment done on

Datentyp

text

Clinical manifestations of PNH
Beschreibung

Clinical manifestations of PNH

Datentyp

boolean

Date of diagnosis of other (if applicable)
Beschreibung

Date of diagnosis of other

Datentyp

date

HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT? If HSCT registration also, please proceed to “Status before HSCT” on page 6 If only Immunosuppressive treatment continue to follow-up form
Beschreibung

HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT?

Datentyp

boolean

ADDITIONAL IMMUNOSUPPRESSIVE TREATMENT EPISODE
Beschreibung

ADDITIONAL IMMUNOSUPPRESSIVE TREATMENT EPISODE

Date treatment started
Beschreibung

Date treatment started

Datentyp

date

SEQUENTIAL NUMBER OF THIS TREATMENT EPISODE
Beschreibung

SEQUENTIAL NUMBER OF THIS TREATMENT EPISODE

Datentyp

text

REASON FOR THIS TREATMENT
Beschreibung

REASON FOR THIS TREATMENT

Datentyp

text

if other, please specify
Beschreibung

REASON FOR THIS TREATMENT

Datentyp

text

Haemoglobin
Beschreibung

Haemoglobin

Datentyp

float

Alias
UMLS CUI [1]
C0019046
Haemoglobin
Beschreibung

Haemoglobin

Datentyp

text

Platelet count
Beschreibung

Platelets

Datentyp

float

Maßeinheiten
  • 1000/uL
Alias
UMLS CUI [1]
C0005821
1000/uL
Platelets
Beschreibung

Platelets

Datentyp

text

Neutrophils
Beschreibung

Neutrophils

Datentyp

text

Reticulocytes
Beschreibung

Reticulocytes

Datentyp

float

Ferritin
Beschreibung

Ferritin

Datentyp

float

Alias
UMLS CUI [1]
C0373607
REASON FOR THIS TREATMENT
Beschreibung

REASON FOR THIS TREATMENT

Datentyp

text

if other, please specify
Beschreibung

REASON FOR THIS TREATMENT

Datentyp

text

Medication
Beschreibung

Medication

Datentyp

text

If other, please specify
Beschreibung

Medication

Datentyp

text

RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
Beschreibung

RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE

Datentyp

text

if other, please specify
Beschreibung

RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE

Datentyp

text

Date response evaluated
Beschreibung

Date response evaluated

Datentyp

date

SECONDARY CLONAL COMPLICATIONS
Beschreibung

SECONDARY CLONAL COMPLICATIONS

Datentyp

boolean

Date of diagnosis of MDS (if applicable)
Beschreibung

Date of diagnosis of MDS

Datentyp

date

MDS WHO classification
Beschreibung

MDS WHO classification

Datentyp

text

Date of diagnosis of PNH (if applicable)
Beschreibung

Date of diagnosis of PNH

Datentyp

date

Size of the PNH clone
Beschreibung

Size of the PNH clone

Datentyp

float

Maßeinheiten
  • %
%
Flow cytometry assessment done on
Beschreibung

Flow cytometry assessment done on

Datentyp

text

Clinical manifestations of PNH
Beschreibung

Clinical manifestations of PNH

Datentyp

boolean

Date of diagnosis of other (if applicable)
Beschreibung

Date of diagnosis of other

Datentyp

date

HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT? If HSCT registration also, please proceed to “Status before HSCT” on page 6 If only Immunosuppressive treatment continue to follow-up form
Beschreibung

HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT?

Datentyp

boolean

STATUS AT HSCT
Beschreibung

STATUS AT HSCT

Date of HSCT
Beschreibung

Date of HSCT

Datentyp

date

Alias
UMLS CUI [1]
C2584899
Chromosome analysis
Beschreibung

Chromosome analysis

Datentyp

text

Alias
UMLS CUI [1]
C0200867
If done: Technique used
Beschreibung

Chromosome analysis

Datentyp

text

Number of metaphases with anomalies
Beschreibung

Number of metaphases with anomalies

Datentyp

text

number of metaphases examined
Beschreibung

number of metaphases examined

Datentyp

text

IF ABNORMAL, INDICATE ABNORMALITIES FOUND (14:16)
Beschreibung

Chromosome analysis

Datentyp

integer

Other or associated abnormalities (specify)
Beschreibung

Other or associated abnormalities (specify)

Datentyp

text

Haemoglobin
Beschreibung

Haemoglobin

Datentyp

float

Maßeinheiten
  • g/dL
Alias
UMLS CUI [1]
C0019046
g/dL
Platelet count
Beschreibung

Platelets

Datentyp

float

Alias
UMLS CUI [1]
C0005821
Neutrophils
Beschreibung

Neutrophils

Datentyp

integer

Alias
UMLS CUI [1]
C0948762
Reticulocytes
Beschreibung

Reticulocytes

Datentyp

float

Ferritin
Beschreibung

Ferritin

Datentyp

float

Alias
UMLS CUI [1]
C0373607
Hemoglobin
Beschreibung

Haemoglobin

Datentyp

integer

Alias
UMLS CUI [1]
C0518015
Platelets
Beschreibung

Platelets

Datentyp

integer

Haemorrhages
Beschreibung

Haemorrhages

Datentyp

text

Resistance to random platelets
Beschreibung

Resistance to random platelets

Datentyp

text

Systemic infection
Beschreibung

Systemic infection

Datentyp

text

Date of PNH test
Beschreibung

Date of PNH test

Datentyp

date

PNH diagnostics by flow cytometry
Beschreibung

PNH diagnostics by flow cytometry

Datentyp

text

Size of the PNH clone in %
Beschreibung

Size of the PNH

Datentyp

text

Maßeinheiten
  • %
%
Flow cytometry assessment done on
Beschreibung

Flow cytometry assessment done on

Datentyp

text

If other, please specify
Beschreibung

Flow cytometry assessment done on

Datentyp

text

PNH diagnostics by other test, specify (if type of test unknown, write “unknown” here)
Beschreibung

PNH diagnostics by other test

Datentyp

text

PNH diagnostics by other test
Beschreibung

PNH diagnostics by other test

Datentyp

text

Clinical manifestations of PNH
Beschreibung

Clinical manifestations of PNH

Datentyp

boolean

RBC
Beschreibung

NUMBER OF TRANSFUSIONS BEFORE HSCT

Datentyp

integer

Alias
UMLS CUI [1]
C0014772
RBC irradiated
Beschreibung

RBC irradiated

Datentyp

text

Platelets
Beschreibung

Platelets

Datentyp

integer

Alias
UMLS CUI [1]
C0005821
Platelets irradiated
Beschreibung

Platelets irradiated

Datentyp

text

ADDITIONAL TREATMENT POST-HSCT
Beschreibung

ADDITIONAL TREATMENT POST-HSCT

Additional Disease Treatment
Beschreibung

Additional Disease Treatment

Datentyp

text

Alias
UMLS CUI [1]
C1706712
ADDITIONAL DISEASE TREATMENT if yes
Beschreibung

ADDITIONAL DISEASE TREATMENT

Datentyp

integer

Alias
UMLS CUI [1]
C1706712
BEST DISEASE RESPONSE AT 100 DAYS POST-HSCT
Beschreibung

BEST DISEASE RESPONSE AT 100 DAYS POST-HSCT

BEST RESPONSE AT 100 DAYS AFTER HSCT
Beschreibung

BEST RESPONSE AT 100 DAYS AFTER HSCT

Datentyp

text

if other, please specify
Beschreibung

BEST RESPONSE AT 100 DAYS AFTER HSCT

Datentyp

text

Date response evaluated
Beschreibung

Date response evaluated

Datentyp

date

FORMS TO BE FILLED IN
Beschreibung

FORMS TO BE FILLED IN

Type of HSCT (Check all that apply):
Beschreibung

Type of HSCT

Datentyp

text

Alias
UMLS CUI [1]
C0472699
BONE MARROW FAILURE SYNDROME (INCLUDING APLASTIC ANAEMIA)
Beschreibung

BONE MARROW FAILURE SYNDROME (INCLUDING APLASTIC ANAEMIA)

Unique Identification Code (UIC) (if known)
Beschreibung

Unique Identification Code (UIC)

Datentyp

text

Alias
UMLS CUI [1]
C2348585
Date of this report
Beschreibung

Date of this report

Datentyp

date

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

Patient in Trial

Datentyp

integer

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

Name of study / trial

Datentyp

text

Alias
UMLS CUI [1]
C0008976
Hospital Unique Patient Number
Beschreibung

Hospital Unique Patient Number

Datentyp

text

First name(s)_surname(s)
Beschreibung

Initials

Datentyp

text

Alias
UMLS CUI [1]
C2986440
Date of birth
Beschreibung

Date of birth

Datentyp

date

Alias
UMLS CUI [1]
C0421451
Date of last HSCT for this patient
Beschreibung

Date of last HSCT for this patient

Datentyp

date

Alias
UMLS CUI [1,1]
C0472699
UMLS CUI [1,2]
C0011008
PATIENT LAST SEEN
Beschreibung

PATIENT LAST SEEN

Date of Last Contact or Death
Beschreibung

Date last contact

Datentyp

date

Alias
UMLS CUI [1]
C0805839
GRAFT VERSUS HOST DISEASE (GvHD) SINCE LAST REPORT
Beschreibung

GRAFT VERSUS HOST DISEASE (GvHD) SINCE LAST REPORT

Maximum grade
Beschreibung

Maximum grade

Datentyp

integer

If present GvHD, Maximum grade
Beschreibung

Maximum grade

Datentyp

integer

Alias
UMLS CUI [1,1]
C0856825
UMLS CUI [1,2]
C0441800
Reason
Beschreibung

Maximum grade

Datentyp

integer

Date onset of this episode
Beschreibung

Date onset of this episode

Datentyp

date

Date onset of this episode
Beschreibung

Date onset of this episode

Datentyp

integer

Alias
UMLS CUI [1,1]
C0574845
UMLS CUI [1,2]
C0011008
Stage skin
Beschreibung

Stage skin

Datentyp

integer

aGvHD: Stage skin
Beschreibung

Stage skin

Datentyp

text

Alias
UMLS CUI [1,1]
C0856825
UMLS CUI [1,2]
C0037274
Stage liver
Beschreibung

aGvHD Stage liver

Datentyp

integer

Alias
UMLS CUI [1,1]
C0856825
UMLS CUI [1,2]
C1306673
UMLS CUI [1,3]
C0023884
Stage gut
Beschreibung

aGvHD stage gut

Datentyp

integer

Alias
UMLS CUI [1,1]
C0856825
UMLS CUI [1,2]
C1306673
UMLS CUI [1,3]
C0021853
aGvHD Resolution
Beschreibung

Resolution

Datentyp

boolean

Alias
UMLS CUI [1,1]
C0856825
UMLS CUI [1,2]
C1514893
Date of resolution
Beschreibung

aGvHD Date of resolution

Datentyp

date

Maßeinheiten
  • yyyy/mm/dd
Alias
UMLS CUI [1,1]
C0856825
UMLS CUI [1,2]
C1514893
UMLS CUI [1,3]
C0011008
yyyy/mm/dd
CHRONIC GRAFT VERSUS HOST DISEASE (CGVHD)
Beschreibung

CHRONIC GRAFT VERSUS HOST DISEASE (CGVHD)

Presence of cGvHD
Beschreibung

Chronic Graft versus Host Disease (cGvHD)

Datentyp

text

Alias
UMLS CUI [1]
C0867389
Date of onset
Beschreibung

Date of onset

Datentyp

date

cGvHD grade
Beschreibung

cGvHD grade

Datentyp

text

Organs affected
Beschreibung

Organs affected

Datentyp

integer

Alias
UMLS CUI [1]
C0449642
If resolved, specify the date of resolution:
Beschreibung

Date of Resolution

Datentyp

date

Alias
UMLS CUI [1,1]
C1514893
UMLS CUI [1,2]
C0011008
OTHER COMPLICATIONS SINCE LAST REPORT
Beschreibung

OTHER COMPLICATIONS SINCE LAST REPORT

Infection related complications
Beschreibung

Infection related complications

Datentyp

boolean

Alias
UMLS CUI [1,1]
C0009450
UMLS CUI [1,2]
C0009566
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Beschreibung

Bacteremia / fungemia / viremia / parasites

Datentyp

text

Date Provide different dates for different episodes of the same complication if applicable.
Beschreibung

Bacteremia / fungemia / viremia / parasites

Datentyp

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Beschreibung

Septic shock

Datentyp

text

Date Provide different dates for different episodes of the same complication if applicable.
Beschreibung

Septic shock

Datentyp

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Beschreibung

ARDS

Datentyp

text

Date Provide different dates for different episodes of the same complication if applicable
Beschreibung

ARDS

Datentyp

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Beschreibung

Multiorgan failure due to infection

Datentyp

text

Date Provide different dates for different episodes of the same complication if applicable.
Beschreibung

Multiorgan failure due to infection

Datentyp

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Beschreibung

Pneumonia

Datentyp

text

Date Provide different dates for different episodes of the same complication if applicable.
Beschreibung

Pneumonia

Datentyp

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Beschreibung

Hepatitis

Datentyp

text

Date Provide different dates for different episodes of the same complication if applicable.
Beschreibung

Hepatitis

Datentyp

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Beschreibung

CNS infection

Datentyp

text

Date Provide different dates for different episodes of the same complication if applicable.
Beschreibung

CNS infection

Datentyp

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Beschreibung

Gut infection

Datentyp

text

Date Provide different dates for different episodes of the same complication if applicable.
Beschreibung

Gut infection

Datentyp

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Beschreibung

Skin infection

Datentyp

text

Date Provide different dates for different episodes of the same complication if applicable.
Beschreibung

Skin infection

Datentyp

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Beschreibung

Cystitis

Datentyp

text

Date Provide different dates for different episodes of the same complication if applicable.
Beschreibung

Cystitis

Datentyp

date

Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
Beschreibung

Retinitis

Datentyp

text

Date Provide different dates for different episodes of the same complication if applicable.
Beschreibung

Retinitis

Datentyp

date

if other type of pathogen, please specify
Beschreibung

Other

Datentyp

text

NON INFECTION RELATED COMPLICATIONS
Beschreibung

NON INFECTION RELATED COMPLICATIONS

Datentyp

integer

Alias
UMLS CUI [1]
C0009566
Idiopathic pneumonia syndrome
Beschreibung

Idiopathic pneumonia syndrome

Datentyp

integer

Alias
UMLS CUI [1]
C1504431
Idiopathic pneumonia syndrome
Beschreibung

Idiopathic pneumonia syndrome

Datentyp

date

Alias
UMLS CUI [1,1]
C1504431
UMLS CUI [1,2]
C0011008
VOD
Beschreibung

VOD

Datentyp

integer

Alias
UMLS CUI [1]
C0948441
VOD
Beschreibung

VOD

Datentyp

date

Cataract
Beschreibung

Cataract

Datentyp

text

Alias
UMLS CUI [1]
C0086543
Cataract
Beschreibung

Cataract

Datentyp

date

Haemorrhagic cystitis, non infectious
Beschreibung

Haemorrhagic cystitis, non infectious

Datentyp

text

Haemorrhagic cystitis, non infectious
Beschreibung

Haemorrhagic cystitis, non infectious

Datentyp

date

Haemorrhagic cystitis, non infectious
Beschreibung

Haemorrhagic cystitis, non infectious

Datentyp

text

Alias
UMLS CUI [1]
C0085692
Specify: ARDS, non infectious
Beschreibung

ARDS, non infectious

Datentyp

text

Alias
UMLS CUI [1]
C0035222
ARDS, non infectious
Beschreibung

ARDS, non infectious

Datentyp

date

Multiorgan failure, non infectious
Beschreibung

Multiorgan failure, non infectious

Datentyp

integer

Alias
UMLS CUI [1]
C0026766
Multiorgan failure, non infectious
Beschreibung

Multiorgan failure, non infectious

Datentyp

date

(Check all that are applicable for this period HSCT-associated microangiopathy
Beschreibung

HSCT-associated microangiopathy

Datentyp

text

Alias
UMLS CUI [1]
C0155765
HSCT-associated microangiopathy
Beschreibung

HSCT-associated microangiopathy

Datentyp

date

(Check all that are applicable for this period) Renal failure requiring dialysis
Beschreibung

Renal failure requiring dialysis

Datentyp

text

Alias
UMLS CUI [1]
C0035078
Renal failure requiring dialysis
Beschreibung

Renal failure requiring dialysis

Datentyp

date

(Check all that are applicable for this period) Haemolytic anaemia due to blood group
Beschreibung

Haemolytic anaemia due to blood group

Datentyp

integer

Alias
UMLS CUI [1]
C0002878
Haemolytic anaemia due to blood group
Beschreibung

Haemolytic anaemia due to blood group

Datentyp

date

Check all that are applicable for this period) Aseptic bone necrosis
Beschreibung

Aseptic bone necrosis

Datentyp

text

Alias
UMLS CUI [1]
C0158452
Aseptic bone necrosis
Beschreibung

Aseptic bone necrosis

Datentyp

date

(Check all that are applicable for this period) if other, please specify
Beschreibung

Other

Datentyp

text

EVENTS SINCE LAST FOLLOW UP
Beschreibung

EVENTS SINCE LAST FOLLOW UP

Graft loss
Beschreibung

Graft loss

Datentyp

text

Alias
UMLS CUI [1]
C0877042
Overall chimaerism
Beschreibung

Overall chimaerism

Datentyp

integer

Date of Test
Beschreibung

Date of Test

Datentyp

date

Alias
UMLS CUI [1,1]
C0024671
UMLS CUI [1,2]
C0011008
Identification of donor or Cord Blood Unit given by the centre
Beschreibung

Identification of donor or Cord Blood Unit given by the centre

Datentyp

text

Number in the infusion order (if applicable)
Beschreibung

Number in the infusion order

Datentyp

text

Alias
UMLS CUI [1]
C0237753
Number in the infusion order (if applicable)
Beschreibung

Number in the infusion order (if applicable)

Datentyp

integer

Alias
UMLS CUI [1]
C2348184
Cell type on which test was performed (% Donor Cells): BM
Beschreibung

Bone marrow

Datentyp

float

Maßeinheiten
  • %
Alias
UMLS CUI [1]
C0005953
%
Cell type on which test was performed (% Donor cells): PB mononuclear cells (PBMC)
Beschreibung

PB mononuclear cells (PBMC)

Datentyp

float

Maßeinheiten
  • %
Alias
UMLS CUI [1]
C1321301
%
Cell type on which test was performed (% Donor cells): B-Cells
Beschreibung

T-Cell

Datentyp

float

Maßeinheiten
  • %
Alias
UMLS CUI [1]
C0004561
%
Cell type on which test was performed (% Donor cells): B-Cells
Beschreibung

B-Cells

Datentyp

float

Maßeinheiten
  • %
Alias
UMLS CUI [1]
C0004561
%
Cell type on which test was performed (% Donor cells): Red blood cells
Beschreibung

Red blood cells

Datentyp

float

Maßeinheiten
  • %
Alias
UMLS CUI [1]
C0014772
%
Cell type on which test was performed (% Donor cells): Monocytes
Beschreibung

Monocytes

Datentyp

float

Maßeinheiten
  • %
Alias
UMLS CUI [1]
C0026473
%
Cell type on which test was performed (% Donor cells): PMNs (neutrophils)
Beschreibung

PMNs (neutrophils)

Datentyp

float

Maßeinheiten
  • %
Alias
UMLS CUI [1]
C0200633
%
Cell type on which test was performed (% Donor cells): Lymphocytes, NOS
Beschreibung

Lymphocytes, NOS

Datentyp

float

Maßeinheiten
  • %
Alias
UMLS CUI [1]
C0024264
%
Cell type on which test was performed (% Donor cells): Myeloid cells, NOS
Beschreibung

Myeloid cells, NOS

Datentyp

float

Maßeinheiten
  • %
Alias
UMLS CUI [1]
C0887899
%
if other, please specify
Beschreibung

Other Cell type

Datentyp

text

SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
Beschreibung

SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED

Datentyp

integer

if yes, date of diagnosis
Beschreibung

SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED

Datentyp

date

Diagnosis
Beschreibung

Diagnosis

Datentyp

text

if other, please specify
Beschreibung

Diagnosis

Datentyp

text

ADDITIONAL TREATMENT SINCE LAST FOLLOW UP
Beschreibung

ADDITIONAL TREATMENT SINCE LAST FOLLOW UP

Treatment given since last report
Beschreibung

Additional treatment

Datentyp

boolean

Alias
UMLS CUI [1]
C1706712
Date started
Beschreibung

Date started

Datentyp

date

Cellular therapy
Beschreibung

Cellular therapy

Datentyp

integer

Alias
UMLS CUI [1]
C0302189
Disease status before this cellular therapy
Beschreibung

Disease status before this cellular therapy

Datentyp

integer

Alias
UMLS CUI [1]
C0012634
Type of cells
Beschreibung

Type of cells

Datentyp

integer

Alias
UMLS CUI [1]
C0302189
Number of cells infused by type
Beschreibung

Number of cells infused by type

Number of Nucleated cells infused (DLI only)
Beschreibung

Nucleated cells

Datentyp

text

Maßeinheiten
  • 10^8/kg
Alias
UMLS CUI [1]
C1180059
10^8/kg
If DLI, specify the number of cells infused by type: Nucleated cells
Beschreibung

Nucleated cells

Datentyp

text

Alias
UMLS CUI [1]
C1180059
If DLI, specify the number of cells infused by type: CD 34+
Beschreibung

CD 34+

Datentyp

text

Alias
UMLS CUI [1]
C3538723
If DLI, specify the number of cells infused by type: CD 3+
Beschreibung

CD 3+

Datentyp

text

Alias
UMLS CUI [1]
C3542405
If non DLI, specify total number of cells infused:
Beschreibung

All cells

Datentyp

text

Alias
UMLS CUI [1]
C0007584
Chronological number of this cell therapy for this patient
Beschreibung

Chronological number of this cell therapy for this patient

Datentyp

text

Indication (check all that apply)
Beschreibung

Indication

Datentyp

text

Alias
UMLS CUI [1,1]
C3146298
UMLS CUI [1,2]
C0302189
if other, please specify
Beschreibung

Indication

Datentyp

text

Number of infusions within 10 weeks (count only infusions that are part of same regimen and given for the same indication)
Beschreibung

Infusion count

Datentyp

float

Alias
UMLS CUI [1,1]
C0574032
UMLS CUI [1,2]
C0750480
Maximum grade
Beschreibung

Maximum grade

Datentyp

integer

ADDITIONAL IMMUNOSUPPRESSIVE (DISEASE) TREATMENT
Beschreibung

ADDITIONAL IMMUNOSUPPRESSIVE (DISEASE) TREATMENT

Datentyp

text

FIRST IMMUNOSUPPRESSIVE TREATMENT EPISODE FOR THIS FOLLOW UP
Beschreibung

FIRST IMMUNOSUPPRESSIVE TREATMENT EPISODE FOR THIS FOLLOW UP

SEQUENTIAL NUMBER OF THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
Beschreibung

SEQUENTIAL NUMBER OF THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE

Datentyp

text

REASON FOR THIS TREATMENT
Beschreibung

REASON FOR THIS TREATMENT

Datentyp

text

RBC
Beschreibung

NUMBER OF TRANSFUSIONS BEFORE HSCT

Datentyp

integer

Alias
UMLS CUI [1]
C0014772
RBC irradiated
Beschreibung

RBC irradiated

Datentyp

text

Platelets
Beschreibung

Platelets

Datentyp

text

Platelets irradiated
Beschreibung

Platelets irradiated

Datentyp

text

Haemoglobin
Beschreibung

Haemoglobin

Datentyp

float

Maßeinheiten
  • g/dL
Alias
UMLS CUI [1]
C0019046
g/dL
Platelet count
Beschreibung

Platelets

Datentyp

float

Alias
UMLS CUI [1]
C0005821
Neutrophils
Beschreibung

Neutrophils

Datentyp

integer

Alias
UMLS CUI [1]
C0948762
Reticulocytes
Beschreibung

Reticulocytes

Datentyp

float

Ferritin
Beschreibung

Ferritin

Datentyp

float

Alias
UMLS CUI [1]
C0373607
Hemoglobin
Beschreibung

Haemoglobin

Datentyp

integer

Alias
UMLS CUI [1]
C0518015
Platelets
Beschreibung

Platelets

Datentyp

integer

Medication
Beschreibung

Medication

Datentyp

text

If other, please specify
Beschreibung

Medication

Datentyp

text

RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
Beschreibung

RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE

Datentyp

text

if other, please specify
Beschreibung

RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE

Datentyp

text

Date response evaluated
Beschreibung

Date response evaluated

Datentyp

date

SECONDARY CLONAL COMPLICATIONS
Beschreibung

SECONDARY CLONAL COMPLICATIONS

Datentyp

boolean

Date of diagnosis of MDS (if applicable)
Beschreibung

Date of diagnosis of MDS

Datentyp

date

MDS WHO classification
Beschreibung

MDS WHO classification

Datentyp

text

Date of diagnosis of PNH (if applicable)
Beschreibung

Date of diagnosis of PNH

Datentyp

date

Size of the PNH clone
Beschreibung

Size of the PNH clone

Datentyp

float

Maßeinheiten
  • %
%
Flow cytometry assessment done on
Beschreibung

Flow cytometry assessment done on

Datentyp

text

Clinical manifestations of PNH
Beschreibung

Clinical manifestations of PNH

Datentyp

boolean

Date of diagnosis of other (if applicable)
Beschreibung

Date of diagnosis of other

Datentyp

date

HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT? If HSCT registration also, please proceed to “Status before HSCT” on page 6 If only Immunosuppressive treatment continue to follow-up form
Beschreibung

HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT?

Datentyp

boolean

FIRST EVIDENCE OF DISEASE WORSENING SINCE LAST HSCT
Beschreibung

FIRST EVIDENCE OF DISEASE WORSENING SINCE LAST HSCT

Relapse or progression
Beschreibung

Relapse or progression

Datentyp

integer

Alias
UMLS CUI [1,1]
C0035020
UMLS CUI [1,2]
C1704632
if yes, date diagnosed
Beschreibung

RELAPSE OR PROGRESSION

Datentyp

date

LAST DISEASE AND PATIENT STATUS
Beschreibung

LAST DISEASE AND PATIENT STATUS

Last Disease Status
Beschreibung

Disease response

Datentyp

text

Date of PNH test
Beschreibung

Date of PNH test

Datentyp

date

Size of the PNH clone in %
Beschreibung

Size of the PNH clone

Datentyp

text

Flow cytometry assessment done on
Beschreibung

Flow cytometry assessment done on

Datentyp

text

if other, please specify
Beschreibung

Flow cytometry assessment done on

Datentyp

text

Clinical manifestations of PNH
Beschreibung

Clinical manifestations of PNH

Datentyp

boolean

Has patient or partner become pregnant after this HSCT?
Beschreibung

Has patient or partner become pregnant after this HSCT?

Datentyp

integer

Survival Status
Beschreibung

Survival Status

Datentyp

integer

Alias
UMLS CUI [1]
C1148433
Type of score used PERFORMANCE SCORE (if alive)
Beschreibung

Type of score used

Datentyp

integer

Score
Beschreibung

Performance score

Datentyp

integer

Alias
UMLS CUI [1]
C1518965
Cause of death (if dead)
Beschreibung

Cause of death

Datentyp

integer

Alias
UMLS CUI [1]
C0007465
Other cause of death:please specify
Beschreibung

Cause of death

Datentyp

text

Alias
UMLS CUI [1]
C0007465
If dead and HSCT related cause of death, specify (check as many as apppropriate): GvHD
Beschreibung

GvHD

Datentyp

text

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C0018133
If dead and HSCT related cause of death, specify (check as many as apppropriate): Interstitial Pneumonitis
Beschreibung

Interstitial Pneumonitis

Datentyp

text

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C0206061
If dead and HSCT related cause of death, specify (check as many as apppropriate): Pulmonary toxicity
Beschreibung

Pulmonary toxicity

Datentyp

text

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C0919924
If dead and HSCT related cause of death, specify (check as many as apppropriate): Infection
Beschreibung

Infection

Datentyp

text

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C0009450
bacterial viral fungal parasitic unknown
Beschreibung

Infection:

Datentyp

text

Rejection / poor graft function
Beschreibung

Rejection / poor graft function

Datentyp

integer

Alias
UMLS CUI [1]
C0018129
If dead and HSCT related cause of death, specify (check as many as apppropriate): Veno-Occlusive disease (VOD)
Beschreibung

Veno-Occlusive disease (VOD)

Datentyp

text

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C0948441
If dead and HSCT related cause of death, specify (check as many as apppropriate): Haemorrhage
Beschreibung

Haemorrhage

Datentyp

text

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C0019080
If dead and HSCT related cause of death, specify (check as many as apppropriate): Cardiac toxicity
Beschreibung

Cardiac toxicity

Datentyp

text

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C0876994
If dead and HSCT related cause of death, specify (check as many as apppropriate): Central nervous system toxicity
Beschreibung

Central nervous system toxicity

Datentyp

text

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C3160947
If dead and HSCT related cause of death, specify (check as many as apppropriate): Gastro intestinal toxicity
Beschreibung

Gastro intestinal toxicity

Datentyp

text

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C1142499
If dead and HSCT related cause of death, specify (check as many as apppropriate): Skin toxicity
Beschreibung

Skin toxicity

Datentyp

text

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C1167791
If dead and HSCT related cause of death, specify (check as many as apppropriate): Renal failure
Beschreibung

Renal failure

Datentyp

text

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C0035078
If dead and HSCT related cause of death, specify (check as many as apppropriate): Multiple organ failure
Beschreibung

Multiple organ failure

Datentyp

text

Alias
UMLS CUI [1,1]
C0007465
UMLS CUI [1,2]
C0026766
ADDITIONAL NOTES IF APPLICABLE
Beschreibung

ADDITIONAL NOTES IF APPLICABLE

COMMENTS
Beschreibung

COMMENTS

Datentyp

text

IDENTIFICATION & SIGNATURE
Beschreibung

IDENTIFICATION & SIGNATURE

Datentyp

text

Ähnliche Modelle

19pp General Info EBMT Aplastic Anemia 06AA

Name
Typ
Description | Question | Decode (Coded Value)
Datentyp
Alias
Item Group
General Information
C1508263 (UMLS CUI-1)
EBMT Centre Identification Code (CIC)
Item
EBMT Centre Identification Code (CIC)
text
C2348585 (UMLS CUI [1])
Hospital
Item
Name of the hospital
text
C0019994 (UMLS CUI [1])
Unit
Item
Unit
text
Contact person
Item
Name of contact person
text
C0337611 (UMLS CUI [1])
Telephone
Item
Telephone number
integer
C1515258 (UMLS CUI [1])
ContactPersonFaxNumber
Item
Fax
text
C0027361 (UMLS CUI [1,1])
C0337611 (UMLS CUI [1,2])
C0085205 (UMLS CUI [1,3])
C0237753 (UMLS CUI [1,4])
ContactPersonE-mailText
Item
E-mail
text
C0027361 (UMLS CUI [1,1])
C0337611 (UMLS CUI [1,2])
C0013849 (UMLS CUI [1,3])
C1527021 (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])
Code List
Patient following national / international study / trial
CL Item
no (1)
CL Item
yes (2)
CL Item
unknown (3)
Name of study / trial
Item
Name of study / trial
text
C0008976 (UMLS CUI [1])
Item Group
GENERAL INFORMATION
Unique Identification Code (UIC)
Item
To be entered only if patient previously reported
text
C2348585 (UMLS CUI [1])
Hospital Unique Patient Number or Code
Item
Hospital Unique Patient Number or Code
text
C1827636 (UMLS CUI [1])
Initials
Item
First name(s)_surname(s)
text
C2986440 (UMLS CUI [1])
Date of birth
Item
Date of birth
date
C0421451 (UMLS CUI [1])
Item
Sex
text
C0079399 (UMLS CUI [1])
Code List
Sex
CL Item
Male (1)
CL Item
Female (2)
ABO Group
Item
ABO Group
integer
C0000778 (UMLS CUI [1])
Item
Rh factor
integer
C0035403 (UMLS CUI [1])
Code List
Rh factor
CL Item
Absent (1)
CL Item
Present  (2)
CL Item
Not evaluated (3)
Item Group
GENERAL INFORMATION
Diagnose-Datum
Item
Date of diagnosis
date
C2316983 (UMLS CUI [1,1])
C1274082 (UMLS CUI [1,2])
Item
Check the disease for which this transplant was performed
text
C0277554 (UMLS CUI [1])
Code List
Check the disease for which this transplant was performed
CL Item
Acute Leukaemia (Acute Leukaemia)
CL Item
Acute Lymphoblastic Leukaemia (ALL) (Acute Lymphoblastic Leukaemia (ALL))
CL Item
Acute Myelogenous Leukaemia (AML) (Acute Myelogenous Leukaemia (AML))
CL Item
Autoimmune disease (Autoimmune disease)
CL Item
Bone marrow failure including Aplastic anaemia (Bone marrow failure including Aplastic anaemia)
CL Item
Chronic Leukaemia (Chronic Leukaemia)
CL Item
Chronic Lymphocytic Leukaemia (Chronic Lymphocytic Leukaemia)
CL Item
Chronic Myeloid Leukaemia (CML) (Chronic Myeloid Leukaemia (CML))
CL Item
Haemoglobinopathiy (Haemoglobinopathiy)
CL Item
Histiocytic disorders (Histiocytic disorders)
CL Item
Hodgkin´s Disease (Hodgkin´s Disease)
CL Item
Inherited disorders (Inherited disorders)
CL Item
Juvenile Idiopathic Arthritis (Juvenile Idiopathic Arthritis)
CL Item
Lymphoma (Lymphoma)
CL Item
MD/ MPN (MD/ MPN)
CL Item
MDS (MDS)
CL Item
Metabolic disorders (Metabolic disorders)
CL Item
Multiple Sclerosis (Multiple Sclerosis)
CL Item
Myelodysplastic syndromes (Myelodysplastic syndromes)
CL Item
Myeloma/ Plasma cell disorder (Myeloma/ Plasma cell disorder)
CL Item
Myeloproliferative neoplasm (Myeloproliferative neoplasm)
CL Item
Non Hodgkin (Non Hodgkin)
CL Item
Other diagnosis (Other diagnosis)
CL Item
Primary immune deficiencies (Primary immune deficiencies)
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
Solid Tumour (Solid Tumour)
CL Item
Systemic Lupus (Systemic Lupus)
CL Item
Systemic Sclerosis (Systemic Sclerosis)
Item Group
BONE MARROW FAILURE SYNDROME (INCLUDING APLASTIC ANAEMIA)
Item
TYPE OF TREATMENT BEING REGISTERED WITH THIS FORM If patients have undergone immunosuppression prior to HSCT tick both boxes
text
Code List
TYPE OF TREATMENT BEING REGISTERED WITH THIS FORM If patients have undergone immunosuppression prior to HSCT tick both boxes
CL Item
Includes HSCT registration (Includes HSCT registration)
CL Item
Immunosuppressive therapy (IS) (Immunosuppressive therapy (IS))
Item Group
SUBCLASSIFICATION
Acquired
Item
Acquired
boolean
Item
Aplastic anaemia
text
Code List
Aplastic anaemia
CL Item
Moderate (Moderate)
CL Item
Severe (Severe)
CL Item
Very severe (Very severe)
Pure red cell aplasia (non constitutional PRCA)
Item
Pure red cell aplasia (non constitutional PRCA)
boolean
Paroxysmal nocturnal haemoglobinuria (PNH)
Item
Paroxysmal nocturnal haemoglobinuria (PNH)
boolean
Haemolytic
Item
Haemolytic
boolean
Aplastic
Item
Aplastic
boolean
Thrombotic
Item
Thrombotic
boolean
Other
Item
if other presentation, please specify
text
Pure white cell aplasia
Item
Pure white cell aplasia
boolean
Amegakaryocytic thrombocytopenia (non constitutional)
Item
Amegakaryocytic thrombocytopenia (non constitutional)
boolean
Other
Item
if other, please specify
text
Genetic
Item
Genetic
boolean
Fanconi
Item
Fanconi
boolean
FANC complementation group
Item
FANC complementation group
text
Diamond-Blackfan (congenital / constitutional PRCA)
Item
Diamond-Blackfan (congenital / constitutional PRCA)
boolean
Shwachman-Diamond Syndrome
Item
Shwachman-Diamond Syndrome
boolean
Dyserythropoietic Anaemia
Item
Dyserythropoietic Anaemia
boolean
Dyskeratosis congenita
Item
Dyskeratosis congenita
boolean
Amegakaryocytic thrombocytopaenia (constitutional)
Item
Amegakaryocytic thrombocytopaenia (constitutional)
boolean
Other
Item
if Other, please specify
text
Item
ETIOLOGY
text
Code List
ETIOLOGY
CL Item
Idiopathic (Idiopathic)
CL Item
Post-hepatitis (Post-hepatitis)
CL Item
Toxic (includes drug induced) (Toxic (includes drug induced))
CL Item
Other (Other)
Item Group
CYTOGENETICS
Item
Chromosome analysis
text
C0200867 (UMLS CUI [1])
Code List
Chromosome analysis
CL Item
Done: abnormal (Done: abnormal)
CL Item
Done: normal (Done: normal)
CL Item
Not Done or failed (Not Done or failed)
CL Item
Unknown (Unknown)
Item
If done: Technique used
text
Code List
If done: Technique used
CL Item
Conventional  (Conventional )
CL Item
FISH  (FISH )
CL Item
Both (Both)
Number of metaphases with anomalies
Item
Number of metaphases with anomalies
text
number of metaphases examined
Item
number of metaphases examined
text
Item
trisomy 8
integer
C0432412 (UMLS CUI [1])
Code List
trisomy 8
CL Item
Absent (1)
CL Item
Present (2)
Item
If abnormal, indicate abnormalities found
text
Code List
If abnormal, indicate abnormalities found
CL Item
Absent  (Absent )
CL Item
Present (Present)
Other or associated abnormalities (specify)
Item
Other or associated abnormalities (specify)
text
Item
Chromosomal breakage test (for Fanconi)
text
Code List
Chromosomal breakage test (for Fanconi)
CL Item
Negative  (Negative )
CL Item
Positive  (Positive )
CL Item
Not evaluated (Not evaluated)
Item Group
HAEMATOLOGICAL VALUES
Haemoglobin
Item
Haemoglobin
float
C0019046 (UMLS CUI [1])
Platelets
Item
Platelet count
float
C0005821 (UMLS CUI [1])
Neutrophils
Item
Neutrophils
integer
C0948762 (UMLS CUI [1])
Reticulocytes
Item
Reticulocytes
float
Ferritin
Item
Ferritin
float
C0373607 (UMLS CUI [1])
Item
Hemoglobin
integer
C0518015 (UMLS CUI [1])
Code List
Hemoglobin
CL Item
Not evaluated  (1)
CL Item
Untransfused  (2)
CL Item
Transfused (3)
Item
Platelets
integer
Code List
Platelets
CL Item
Not evaluated  (1)
CL Item
Untransfused  (2)
CL Item
Transfused (3)
Item Group
COMPLICATIONS
Item
Haemorrhages
text
Code List
Haemorrhages
CL Item
Yes  (Yes )
CL Item
No  (No )
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Item
Resistance to random platelets
text
Code List
Resistance to random platelets
CL Item
Yes  (Yes )
CL Item
No  (No )
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Item
Systemic infection
text
Code List
Systemic infection
CL Item
Yes  (Yes )
CL Item
No  (No )
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Item Group
PNH TESTS
Date of PNH test
Item
Date of PNH test
date
Item
PNH diagnostics by flow cytometry
text
Code List
PNH diagnostics by flow cytometry
CL Item
Clone absent (Clone absent)
CL Item
Clone present (Clone present)
CL Item
Not evaluated (Not evaluated)
Size of the PNH
Item
Size of the PNH clone in %
text
Item
Flow cytometry assessment done on
text
Code List
Flow cytometry assessment done on
CL Item
Granulocytes (Granulocytes)
CL Item
RBC (RBC)
CL Item
Both (Both)
CL Item
Other (Other)
CL Item
Not done (Not done)
Flow cytometry assessment done on
Item
If other, please specify
text
PNH diagnostics by other test
Item
PNH diagnostics by other test, specify (if type of test unknown, write “unknown” here)
text
Item
PNH diagnostics by other test
text
Code List
PNH diagnostics by other test
CL Item
Clone absent (Clone absent)
CL Item
Clone present (Clone present)
CL Item
Not done (Not done)
Clinical manifestations of PNH
Item
Clinical manifestations of PNH
boolean
Item Group
FIRST IMMUNOSUPPRESSIVE TREATMENT EPISODE
Item
WAS THE PATIENT TREATED BEFORE THE HSCT PROCEDURE?
integer
Code List
WAS THE PATIENT TREATED BEFORE THE HSCT PROCEDURE?
CL Item
No  (1)
CL Item
Yes, Date started (2)
FIRST TREATMENT EPISODE FOR THIS REGISTRATION
Item
Date treatment started
date
SEQUENTIAL NUMBER OF THIS TREATMENT EPISODE
Item
SEQUENTIAL NUMBER OF THIS TREATMENT EPISODE (Other treatment episodes can have been registered for this patient with previous data submissions)
text
Item Group
IF 1ST TREATMENT EPISODE FOR THE PATIENT EVER
Item
RBC
integer
C0014772 (UMLS CUI [1])
CL Item
< 20 UNITS (< 20 UNITS)
CL Item
> 50 UNITS (> 50 UNITS)
CL Item
20-50 UNITS (20-50 UNITS)
CL Item
NONE (NONE)
CL Item
UNKNOWN (UNKNOWN)
Item
RBC irradiated
text
Code List
RBC irradiated
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
Item
Platelets
integer
C0005821 (UMLS CUI [1])
Code List
Platelets
CL Item
NONE (1)
CL Item
< 20 UNITS (2)
CL Item
20-50 UNITS (3)
CL Item
> 50 UNITS (4)
CL Item
UNKNOWN (5)
Item
Platelets irradiated
text
Code List
Platelets irradiated
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
Item Group
IF PATIENT HAS BEEN TREATED BEFORE
Haemoglobin
Item
Haemoglobin
float
C0019046 (UMLS CUI [1])
Item
Haemoglobin
text
Code List
Haemoglobin
CL Item
Not evaluated  (Not evaluated )
CL Item
Untransfused  (Untransfused )
CL Item
Transfused (Transfused)
Platelets
Item
Platelet count
float
C0005821 (UMLS CUI [1])
Item
Platelets
text
Code List
Platelets
CL Item
Not evaluated (Not evaluated)
CL Item
Untransfused  (Untransfused )
CL Item
Transfused (Transfused)
Neutrophils
Item
Neutrophils
text
Reticulocytes
Item
Reticulocytes
float
Ferritin
Item
Ferritin
float
C0373607 (UMLS CUI [1])
Item
REASON FOR THIS TREATMENT
text
Code List
REASON FOR THIS TREATMENT
CL Item
Failure of first line therapy (Failure of first line therapy)
CL Item
Relapse (Relapse)
CL Item
PR to previous treatment (PR to previous treatment)
CL Item
Secondary clonal disorder (Secondary clonal disorder)
CL Item
Other (Other)
CL Item
Unknown (Unknown)
REASON FOR THIS TREATMENT
Item
if other, please specify
text
Item
Medication
text
Code List
Medication
CL Item
ATG Origin (ATG Origin)
CL Item
Cyclosporin A (Cyclosporin A)
CL Item
Cyclophosphamide (Cyclophosphamide)
CL Item
Mycophenolate mofetil (Mycophenolate mofetil)
CL Item
G-CSF (G-CSF)
CL Item
Erythropoietin (Erythropoietin)
CL Item
Corticosteroid (Corticosteroid)
CL Item
Androgens (Androgens)
CL Item
Rituximab (Mabthera) (Rituximab (Mabthera))
CL Item
Alemtuzumab (Campath) (Alemtuzumab (Campath))
CL Item
Other (Other)
Medication
Item
If other, please specify
text
Item
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
text
Code List
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
CL Item
Complete remission  (Complete remission )
CL Item
Partial remission (transfusion and growth factor independent) (Partial remission (transfusion and growth factor independent))
CL Item
No response  (No response )
CL Item
Progression  (Progression )
CL Item
Not evaluable (Not evaluable)
CL Item
Other (Other)
CL Item
Unknown (Unknown)
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
Item
if other, please specify
text
Date response evaluated
Item
Date response evaluated
date
SECONDARY CLONAL COMPLICATIONS
Item
SECONDARY CLONAL COMPLICATIONS
boolean
Date of diagnosis of MDS
Item
Date of diagnosis of MDS (if applicable)
date
MDS WHO classification
Item
MDS WHO classification
text
Date of diagnosis of PNH
Item
Date of diagnosis of PNH (if applicable)
date
Size of the PNH clone
Item
Size of the PNH clone
float
Item
Flow cytometry assessment done on
text
Code List
Flow cytometry assessment done on
CL Item
Granulocytes  (Granulocytes )
CL Item
RBC  (RBC )
CL Item
Both (Both)
CL Item
Other (Other)
CL Item
FLWCYTAA  (FLWCYTAA )
CL Item
Not done (Not done)
Clinical manifestations of PNH
Item
Clinical manifestations of PNH
boolean
Date of diagnosis of other
Item
Date of diagnosis of other (if applicable)
date
HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT?
Item
HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT? If HSCT registration also, please proceed to “Status before HSCT” on page 6 If only Immunosuppressive treatment continue to follow-up form
boolean
Item Group
ADDITIONAL IMMUNOSUPPRESSIVE TREATMENT EPISODE
Date treatment started
Item
Date treatment started
date
SEQUENTIAL NUMBER OF THIS TREATMENT EPISODE
Item
SEQUENTIAL NUMBER OF THIS TREATMENT EPISODE
text
Item
REASON FOR THIS TREATMENT
text
Code List
REASON FOR THIS TREATMENT
CL Item
Failure of first line therapy  (Failure of first line therapy )
CL Item
Relapse  (Relapse )
CL Item
PR to previous treatment (PR to previous treatment)
CL Item
Secondary clonal disorder  (Secondary clonal disorder )
CL Item
Other  (Other )
CL Item
Unknown (Unknown)
REASON FOR THIS TREATMENT
Item
if other, please specify
text
Haemoglobin
Item
Haemoglobin
float
C0019046 (UMLS CUI [1])
Item
Haemoglobin
text
Code List
Haemoglobin
CL Item
Not evaluated  (Not evaluated )
CL Item
Untransfused  (Untransfused )
CL Item
Transfused (Transfused)
Platelets
Item
Platelet count
float
C0005821 (UMLS CUI [1])
Item
Platelets
text
Code List
Platelets
CL Item
Not evaluated (Not evaluated)
CL Item
Untransfused  (Untransfused )
CL Item
Transfused (Transfused)
Neutrophils
Item
Neutrophils
text
Reticulocytes
Item
Reticulocytes
float
Ferritin
Item
Ferritin
float
C0373607 (UMLS CUI [1])
Item
REASON FOR THIS TREATMENT
text
Code List
REASON FOR THIS TREATMENT
CL Item
Failure of first line therapy (Failure of first line therapy)
CL Item
Relapse (Relapse)
CL Item
PR to previous treatment (PR to previous treatment)
CL Item
Secondary clonal disorder (Secondary clonal disorder)
CL Item
Other (Other)
CL Item
Unknown (Unknown)
REASON FOR THIS TREATMENT
Item
if other, please specify
text
Item
Medication
text
Code List
Medication
CL Item
ATG Origin (ATG Origin)
CL Item
Cyclosporin A (Cyclosporin A)
CL Item
Cyclophosphamide (Cyclophosphamide)
CL Item
Mycophenolate mofetil (Mycophenolate mofetil)
CL Item
G-CSF (G-CSF)
CL Item
Erythropoietin (Erythropoietin)
CL Item
Corticosteroid (Corticosteroid)
CL Item
Androgens (Androgens)
CL Item
Rituximab (Mabthera) (Rituximab (Mabthera))
CL Item
Alemtuzumab (Campath) (Alemtuzumab (Campath))
CL Item
Other (Other)
Medication
Item
If other, please specify
text
Item
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
text
Code List
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
CL Item
Complete remission  (Complete remission )
CL Item
Partial remission (transfusion and growth factor independent) (Partial remission (transfusion and growth factor independent))
CL Item
No response  (No response )
CL Item
Progression  (Progression )
CL Item
Not evaluable (Not evaluable)
CL Item
Other (Other)
CL Item
Unknown (Unknown)
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
Item
if other, please specify
text
Date response evaluated
Item
Date response evaluated
date
SECONDARY CLONAL COMPLICATIONS
Item
SECONDARY CLONAL COMPLICATIONS
boolean
Date of diagnosis of MDS
Item
Date of diagnosis of MDS (if applicable)
date
MDS WHO classification
Item
MDS WHO classification
text
Date of diagnosis of PNH
Item
Date of diagnosis of PNH (if applicable)
date
Size of the PNH clone
Item
Size of the PNH clone
float
Item
Flow cytometry assessment done on
text
Code List
Flow cytometry assessment done on
CL Item
Granulocytes  (Granulocytes )
CL Item
RBC  (RBC )
CL Item
Both (Both)
CL Item
Other (Other)
CL Item
FLWCYTAA  (FLWCYTAA )
CL Item
Not done (Not done)
Clinical manifestations of PNH
Item
Clinical manifestations of PNH
boolean
Date of diagnosis of other
Item
Date of diagnosis of other (if applicable)
date
HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT?
Item
HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT? If HSCT registration also, please proceed to “Status before HSCT” on page 6 If only Immunosuppressive treatment continue to follow-up form
boolean
Item Group
STATUS AT HSCT
Date of HSCT
Item
Date of HSCT
date
C2584899 (UMLS CUI [1])
Item
Chromosome analysis
text
C0200867 (UMLS CUI [1])
Code List
Chromosome analysis
CL Item
Done: abnormal (Done: abnormal)
CL Item
Done: normal (Done: normal)
CL Item
Not Done or failed (Not Done or failed)
CL Item
Unknown (Unknown)
Item
If done: Technique used
text
Code List
If done: Technique used
CL Item
Conventional  (Conventional )
CL Item
FISH  (FISH )
CL Item
Both (Both)
Number of metaphases with anomalies
Item
Number of metaphases with anomalies
text
number of metaphases examined
Item
number of metaphases examined
text
Item
IF ABNORMAL, INDICATE ABNORMALITIES FOUND (14:16)
integer
Code List
IF ABNORMAL, INDICATE ABNORMALITIES FOUND (14:16)
CL Item
Absent (Absent)
CL Item
Not evaluated (Not evaluated)
CL Item
Present (Present)
Other or associated abnormalities (specify)
Item
Other or associated abnormalities (specify)
text
Haemoglobin
Item
Haemoglobin
float
C0019046 (UMLS CUI [1])
Platelets
Item
Platelet count
float
C0005821 (UMLS CUI [1])
Neutrophils
Item
Neutrophils
integer
C0948762 (UMLS CUI [1])
Reticulocytes
Item
Reticulocytes
float
Ferritin
Item
Ferritin
float
C0373607 (UMLS CUI [1])
Item
Hemoglobin
integer
C0518015 (UMLS CUI [1])
Code List
Hemoglobin
CL Item
Not evaluated  (1)
CL Item
Untransfused  (2)
CL Item
Transfused (3)
Item
Platelets
integer
Code List
Platelets
CL Item
Not evaluated  (1)
CL Item
Untransfused  (2)
CL Item
Transfused (3)
Item
Haemorrhages
text
Code List
Haemorrhages
CL Item
Yes  (Yes )
CL Item
No  (No )
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Item
Resistance to random platelets
text
Code List
Resistance to random platelets
CL Item
Yes  (Yes )
CL Item
No  (No )
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Item
Systemic infection
text
Code List
Systemic infection
CL Item
Yes  (Yes )
CL Item
No  (No )
CL Item
Not evaluated  (Not evaluated )
CL Item
Unknown (Unknown)
Date of PNH test
Item
Date of PNH test
date
Item
PNH diagnostics by flow cytometry
text
Code List
PNH diagnostics by flow cytometry
CL Item
Clone absent (Clone absent)
CL Item
Clone present (Clone present)
CL Item
Not evaluated (Not evaluated)
Size of the PNH
Item
Size of the PNH clone in %
text
Item
Flow cytometry assessment done on
text
Code List
Flow cytometry assessment done on
CL Item
Granulocytes (Granulocytes)
CL Item
RBC (RBC)
CL Item
Both (Both)
CL Item
Other (Other)
CL Item
Not done (Not done)
Flow cytometry assessment done on
Item
If other, please specify
text
PNH diagnostics by other test
Item
PNH diagnostics by other test, specify (if type of test unknown, write “unknown” here)
text
Item
PNH diagnostics by other test
text
Code List
PNH diagnostics by other test
CL Item
Clone absent (Clone absent)
CL Item
Clone present (Clone present)
CL Item
Not done (Not done)
Clinical manifestations of PNH
Item
Clinical manifestations of PNH
boolean
Item
RBC
integer
C0014772 (UMLS CUI [1])
CL Item
< 20 UNITS (< 20 UNITS)
CL Item
> 50 UNITS (> 50 UNITS)
CL Item
20-50 UNITS (20-50 UNITS)
CL Item
NONE (NONE)
CL Item
UNKNOWN (UNKNOWN)
Item
RBC irradiated
text
Code List
RBC irradiated
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
Item
Platelets
integer
C0005821 (UMLS CUI [1])
Code List
Platelets
CL Item
NONE (1)
CL Item
< 20 UNITS (2)
CL Item
20-50 UNITS (3)
CL Item
> 50 UNITS (4)
CL Item
UNKNOWN (5)
Item
Platelets irradiated
text
Code List
Platelets irradiated
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
Item Group
ADDITIONAL TREATMENT POST-HSCT
Item
Additional Disease Treatment
text
C1706712 (UMLS CUI [1])
Code List
Additional Disease Treatment
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Item
ADDITIONAL DISEASE TREATMENT if yes
integer
C1706712 (UMLS CUI [1])
Code List
ADDITIONAL DISEASE TREATMENT if yes
CL Item
Planned (planned before HSCT took place) (1)
CL Item
Not planned (for relapse/progression or persistent disease) (2)
Item Group
BEST DISEASE RESPONSE AT 100 DAYS POST-HSCT
Item
BEST RESPONSE AT 100 DAYS AFTER HSCT
text
Code List
BEST RESPONSE AT 100 DAYS AFTER HSCT
CL Item
Complete remission  (Complete remission )
CL Item
Partial remission (transfusion and growth factor independent) (Partial remission (transfusion and growth factor independent))
CL Item
No response  (No response )
CL Item
Progression  (Progression )
CL Item
Not evaluable (Not evaluable)
CL Item
Other (Other)
CL Item
Unknown (Unknown)
BEST RESPONSE AT 100 DAYS AFTER HSCT
Item
if other, please specify
text
Date response evaluated
Item
Date response evaluated
date
Item Group
FORMS TO BE FILLED IN
Item
Type of HSCT (Check all that apply):
text
C0472699 (UMLS CUI [1])
Code List
Type of HSCT (Check all that apply):
CL Item
ALLOgraft or Synergenic graft, proceed to Allograft form (ALLOgraft or Synergenic graft, proceed to Allograft form)
CL Item
AUTOgraft, proceed to Autograft form (AUTOgraft, proceed to Autograft form)
CL Item
Other, contact the EBMT Central Registry Office for instructions (Other, contact the EBMT Central Registry Office for instructions)
Item Group
BONE MARROW FAILURE SYNDROME (INCLUDING APLASTIC ANAEMIA)
Unique Identification Code (UIC)
Item
Unique Identification Code (UIC) (if known)
text
C2348585 (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])
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
C0008976 (UMLS CUI [1])
Hospital Unique Patient Number
Item
Hospital Unique Patient Number
text
Initials
Item
First name(s)_surname(s)
text
C2986440 (UMLS CUI [1])
Date of birth
Item
Date of birth
date
C0421451 (UMLS CUI [1])
Date of last HSCT for this patient
Item
Date of last HSCT for this patient
date
C0472699 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Item Group
PATIENT LAST SEEN
Date last contact
Item
Date of Last Contact or Death
date
C0805839 (UMLS CUI [1])
Item Group
GRAFT VERSUS HOST DISEASE (GvHD) SINCE LAST REPORT
Item
Maximum grade
integer
Code List
Maximum grade
CL Item
grade 0 (Absent)  (1)
CL Item
grade I  (2)
CL Item
grade II  (3)
CL Item
grade III  (4)
CL Item
grade IV  (5)
CL Item
Not evaluated (6)
Item
If present GvHD, Maximum grade
integer
C0856825 (UMLS CUI [1,1])
C0441800 (UMLS CUI [1,2])
Code List
If present GvHD, Maximum grade
CL Item
New onset (1)
CL Item
Recurrent (2)
CL Item
Persistent (3)
Item
Reason
integer
Code List
Reason
CL Item
Tapering (1)
CL Item
DLI (2)
CL Item
Unexplained (3)
Date onset of this episode
Item
Date onset of this episode
date
Item
Date onset of this episode
integer
C0574845 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Code List
Date onset of this episode
CL Item
Not applicable (1)
Item
Stage skin
integer
Code List
Stage skin
CL Item
None (0)
CL Item
Stage 1 (1)
CL Item
Stage 2 (2)
CL Item
Stage 3 (3)
CL Item
Stage 4 (4)
Item
aGvHD: Stage skin
text
C0856825 (UMLS CUI [1,1])
C0037274 (UMLS CUI [1,2])
Code List
aGvHD: Stage skin
CL Item
Evaluated (Evaluated)
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
Stage liver
integer
C0856825 (UMLS CUI [1,1])
C1306673 (UMLS CUI [1,2])
C0023884 (UMLS CUI [1,3])
Code List
Stage liver
CL Item
0 (1)
CL Item
1 (2)
CL Item
2 (3)
CL Item
3 (4)
CL Item
4 (5)
CL Item
Not evaluated (6)
CL Item
unknown (7)
Item
Stage gut
integer
C0856825 (UMLS CUI [1,1])
C1306673 (UMLS CUI [1,2])
C0021853 (UMLS CUI [1,3])
Code List
Stage gut
CL Item
0 (1)
CL Item
1 (2)
CL Item
2 (3)
CL Item
3 (4)
CL Item
4 (5)
CL Item
Not evaluated (6)
CL Item
unknown (7)
Resolution
Item
aGvHD Resolution
boolean
C0856825 (UMLS CUI [1,1])
C1514893 (UMLS CUI [1,2])
aGvHD Date of resolution
Item
Date of resolution
date
C0856825 (UMLS CUI [1,1])
C1514893 (UMLS CUI [1,2])
C0011008 (UMLS CUI [1,3])
Item Group
CHRONIC GRAFT VERSUS HOST DISEASE (CGVHD)
Item
Presence of cGvHD
text
C0867389 (UMLS CUI [1])
Code List
Presence of cGvHD
CL Item
No (No)
CL Item
Present continuously since last reported episode (Present continuously since last reported episode)
CL Item
Resolved (Resolved)
CL Item
Yes (Yes)
Date of onset
Item
Date of onset
date
Item
cGvHD grade
text
Code List
cGvHD grade
CL Item
Limited  (Limited )
CL Item
Extensive (Extensive)
Item
Organs affected
integer
C0449642 (UMLS CUI [1])
Code List
Organs affected
CL Item
Skin (1)
CL Item
Gut (2)
CL Item
Liver (3)
CL Item
Mouth (4)
CL Item
Eyes (5)
CL Item
Lung (6)
CL Item
Other, specify (7)
CL Item
Unknown (8)
Date of Resolution
Item
If resolved, specify the date of resolution:
date
C1514893 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Item Group
OTHER COMPLICATIONS SINCE LAST REPORT
Infection related complications
Item
Infection related complications
boolean
C0009450 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
Bacteremia / fungemia / viremia / parasites
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Bacteremia / fungemia / viremia / parasites
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Septic shock
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Septic shock
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
ARDS
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
ARDS
Item
Date Provide different dates for different episodes of the same complication if applicable
date
Multiorgan failure due to infection
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Multiorgan failure due to infection
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Pneumonia
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Pneumonia
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Hepatitis
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Hepatitis
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
CNS infection
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
CNS infection
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Gut infection
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Gut infection
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Skin infection
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Skin infection
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Cystitis
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Cystitis
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Retinitis
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Retinitis
Item
Date Provide different dates for different episodes of the same complication if applicable.
date
Other
Item
if other type of pathogen, please specify
text
Item
NON INFECTION RELATED COMPLICATIONS
integer
C0009566 (UMLS CUI [1])
Code List
NON INFECTION RELATED COMPLICATIONS
CL Item
No complications (1)
CL Item
Yes (2)
Item
Idiopathic pneumonia syndrome
integer
C1504431 (UMLS CUI [1])
Code List
Idiopathic pneumonia syndrome
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Idiopathic pneumonia syndrome
Item
Idiopathic pneumonia syndrome
date
C1504431 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Item
VOD
integer
C0948441 (UMLS CUI [1])
Code List
VOD
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
VOD
Item
VOD
date
Item
Cataract
text
C0086543 (UMLS CUI [1])
Code List
Cataract
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Cataract
Item
Cataract
date
Item
Haemorrhagic cystitis, non infectious
text
Code List
Haemorrhagic cystitis, non infectious
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
Haemorrhagic cystitis, non infectious
Item
Haemorrhagic cystitis, non infectious
date
Item
Haemorrhagic cystitis, non infectious
text
C0085692 (UMLS CUI [1])
Code List
Haemorrhagic cystitis, non infectious
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes )
Item
Specify: ARDS, non infectious
text
C0035222 (UMLS CUI [1])
Code List
Specify: ARDS, non infectious
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
ARDS, non infectious
Item
ARDS, non infectious
date
Item
Multiorgan failure, non infectious
integer
C0026766 (UMLS CUI [1])
Code List
Multiorgan failure, non infectious
CL Item
no  (no )
CL Item
unknown (unknown)
CL Item
yes (yes )
Multiorgan failure, non infectious
Item
Multiorgan failure, non infectious
date
Item
(Check all that are applicable for this period HSCT-associated microangiopathy
text
C0155765 (UMLS CUI [1])
Code List
(Check all that are applicable for this period HSCT-associated microangiopathy
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
HSCT-associated microangiopathy
Item
HSCT-associated microangiopathy
date
Item
(Check all that are applicable for this period) Renal failure requiring dialysis
text
C0035078 (UMLS CUI [1])
Code List
(Check all that are applicable for this period) Renal failure requiring dialysis
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Renal failure requiring dialysis
Item
Renal failure requiring dialysis
date
Item
(Check all that are applicable for this period) Haemolytic anaemia due to blood group
integer
C0002878 (UMLS CUI [1])
Code List
(Check all that are applicable for this period) Haemolytic anaemia due to blood group
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Haemolytic anaemia due to blood group
Item
Haemolytic anaemia due to blood group
date
Item
Check all that are applicable for this period) Aseptic bone necrosis
text
C0158452 (UMLS CUI [1])
Code List
Check all that are applicable for this period) Aseptic bone necrosis
CL Item
No (No)
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Aseptic bone necrosis
Item
Aseptic bone necrosis
date
Other
Item
(Check all that are applicable for this period) if other, please specify
text
Item Group
EVENTS SINCE LAST FOLLOW UP
Item
Graft loss
text
C0877042 (UMLS CUI [1])
Code List
Graft loss
CL Item
No (No)
CL Item
Not evaluated (Not evaluated)
CL Item
Yes (Yes)
Item
Overall chimaerism
integer
Code List
Overall chimaerism
CL Item
Full (donor >95 %)  (1)
CL Item
Mixed (partial) (2)
CL Item
Autologous reconstitution (recipient >95 %)  (3)
CL Item
Aplasia (4)
CL Item
Not evaluated (5)
Date of Test
Item
Date of Test
date
C0024671 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Identification of donor or Cord Blood Unit given by the centre
Item
Identification of donor or Cord Blood Unit given by the centre
text
Number in the infusion order
Item
Number in the infusion order (if applicable)
text
C0237753 (UMLS CUI [1])
Item
Number in the infusion order (if applicable)
integer
C2348184 (UMLS CUI [1])
Code List
Number in the infusion order (if applicable)
CL Item
......... (1)
CL Item
N/A (2)
Bone marrow
Item
Cell type on which test was performed (% Donor Cells): BM
float
C0005953 (UMLS CUI [1])
PB mononuclear cells (PBMC)
Item
Cell type on which test was performed (% Donor cells): PB mononuclear cells (PBMC)
float
C1321301 (UMLS CUI [1])
T-Cell
Item
Cell type on which test was performed (% Donor cells): B-Cells
float
C0004561 (UMLS CUI [1])
B-Cells
Item
Cell type on which test was performed (% Donor cells): B-Cells
float
C0004561 (UMLS CUI [1])
Red blood cells
Item
Cell type on which test was performed (% Donor cells): Red blood cells
float
C0014772 (UMLS CUI [1])
Monocytes
Item
Cell type on which test was performed (% Donor cells): Monocytes
float
C0026473 (UMLS CUI [1])
PMNs (neutrophils)
Item
Cell type on which test was performed (% Donor cells): PMNs (neutrophils)
float
C0200633 (UMLS CUI [1])
Lymphocytes, NOS
Item
Cell type on which test was performed (% Donor cells): Lymphocytes, NOS
float
C0024264 (UMLS CUI [1])
Myeloid cells, NOS
Item
Cell type on which test was performed (% Donor cells): Myeloid cells, NOS
float
C0887899 (UMLS CUI [1])
Other Cell type
Item
if other, please specify
text
Item
SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
integer
Code List
SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
CL Item
Previously reported (1)
CL Item
Yes (2)
CL Item
No at date of this follow-up (3)
SECONDARY MALIGNANCY, LYMPHOPROLIFERATIVE OR MYELOPROLIFRATIVE DISORDER DIAGNOSED
Item
if yes, date of diagnosis
date
Item
Diagnosis
text
Code List
Diagnosis
CL Item
AML  (AML )
CL Item
MDS  (MDS )
CL Item
Lymphoproliferative disorder (Lymphoproliferative disorder)
CL Item
Other (Other)
Diagnosis
Item
if other, please specify
text
Item Group
ADDITIONAL TREATMENT SINCE LAST FOLLOW UP
Additional treatment
Item
Treatment given since last report
boolean
C1706712 (UMLS CUI [1])
Date started
Item
Date started
date
Item
Cellular therapy
integer
C0302189 (UMLS CUI [1])
Code List
Cellular therapy
CL Item
No  (1)
CL Item
Yes (Mark disease status before this cellular therapy) (2)
CL Item
Unknown (3)
Item
Disease status before this cellular therapy
integer
C0012634 (UMLS CUI [1])
Code List
Disease status before this cellular therapy
CL Item
CR (CR)
CL Item
Not evaluated (Not evaluated)
CL Item
Not in CR (Not in CR)
Item
Type of cells
integer
C0302189 (UMLS CUI [1])
Code List
Type of cells
CL Item
Donor lymphocyte infusion (DLI) (1)
CL Item
Mesenchymal cells (2)
CL Item
Other (3)
CL Item
Unknown (4)
Item Group
Number of cells infused by type
Nucleated cells
Item
Number of Nucleated cells infused (DLI only)
text
C1180059 (UMLS CUI [1])
Item
If DLI, specify the number of cells infused by type: Nucleated cells
text
C1180059 (UMLS CUI [1])
Code List
If DLI, specify the number of cells infused by type: Nucleated cells
CL Item
Evaluated (Evaluated)
CL Item
Not evaluated (Not evaluated)
CL Item
unknown (unknown)
Item
If DLI, specify the number of cells infused by type: CD 34+
text
C3538723 (UMLS CUI [1])
Code List
If DLI, specify the number of cells infused by type: CD 34+
CL Item
Evaluated (Evaluated)
CL Item
Not Evaluated (Not Evaluated)
CL Item
Unknown (Unknown)
Item
If DLI, specify the number of cells infused by type: CD 3+
text
C3542405 (UMLS CUI [1])
Code List
If DLI, specify the number of cells infused by type: CD 3+
CL Item
Evaluated  (Evaluated )
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
Item
If non DLI, specify total number of cells infused:
text
C0007584 (UMLS CUI [1])
Code List
If non DLI, specify total number of cells infused:
CL Item
Evaluated (Evaluated)
CL Item
Not Evaluated (Not Evaluated)
CL Item
Unknown (Unknown)
Chronological number of this cell therapy for this patient
Item
Chronological number of this cell therapy for this patient
text
Item
Indication (check all that apply)
text
C3146298 (UMLS CUI [1,1])
C0302189 (UMLS CUI [1,2])
Code List
Indication (check all that apply)
CL Item
Loss/decreased chimaerism (Loss/decreased chimaerism)
CL Item
Mixed chimaerism (Mixed chimaerism)
CL Item
Other (Other)
CL Item
Planned/ protocol (Planned/ protocol)
CL Item
Prophylactic (Prophylactic)
CL Item
Treatment for disease (Treatment for disease)
CL Item
Treatment of GvHD (Treatment of GvHD)
CL Item
Treatment PTLD, EBV, lymphoma (Treatment PTLD, EBV, lymphoma)
CL Item
Treatment viral infection (Treatment viral infection)
Indication
Item
if other, please specify
text
Infusion count
Item
Number of infusions within 10 weeks (count only infusions that are part of same regimen and given for the same indication)
float
C0574032 (UMLS CUI [1,1])
C0750480 (UMLS CUI [1,2])
Item
Maximum grade
integer
Code List
Maximum grade
CL Item
grade 0 (absent)  (1)
CL Item
grade 1  (2)
CL Item
grade 2 (3)
CL Item
grade 3  (4)
CL Item
grade 4  (5)
CL Item
present, grade unknown (6)
Item
ADDITIONAL IMMUNOSUPPRESSIVE (DISEASE) TREATMENT
text
Code List
ADDITIONAL IMMUNOSUPPRESSIVE (DISEASE) TREATMENT
CL Item
No additional therapy except transfusions (No additional therapy except transfusions)
CL Item
Yes: Planned (planned before HSCT took place)  (Yes: Planned (planned before HSCT took place) )
CL Item
Yes: Not planned (for relapse/progression or persistent disease) (Yes: Not planned (for relapse/progression or persistent disease))
Item Group
FIRST IMMUNOSUPPRESSIVE TREATMENT EPISODE FOR THIS FOLLOW UP
SEQUENTIAL NUMBER OF THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
Item
SEQUENTIAL NUMBER OF THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
text
Item
REASON FOR THIS TREATMENT
text
Code List
REASON FOR THIS TREATMENT
CL Item
Failure of previous treatment  (Failure of previous treatment )
CL Item
Relapse  (Relapse )
CL Item
PR to previous treatment (PR to previous treatment)
CL Item
Secondary clonal disorder  (Secondary clonal disorder )
CL Item
Other (Other)
CL Item
Unknown (Unknown)
Item
RBC
integer
C0014772 (UMLS CUI [1])
CL Item
< 20 UNITS (< 20 UNITS)
CL Item
> 50 UNITS (> 50 UNITS)
CL Item
20-50 UNITS (20-50 UNITS)
CL Item
NONE (NONE)
CL Item
UNKNOWN (UNKNOWN)
Item
RBC irradiated
text
Code List
RBC irradiated
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
Item
Platelets
text
Code List
Platelets
CL Item
<20 units  (<20 units )
CL Item
20-50 units  (20-50 units )
CL Item
>50 units  (>50 units )
CL Item
None  (None )
CL Item
unknown (unknown)
Item
Platelets irradiated
text
Code List
Platelets irradiated
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
Haemoglobin
Item
Haemoglobin
float
C0019046 (UMLS CUI [1])
Platelets
Item
Platelet count
float
C0005821 (UMLS CUI [1])
Neutrophils
Item
Neutrophils
integer
C0948762 (UMLS CUI [1])
Reticulocytes
Item
Reticulocytes
float
Ferritin
Item
Ferritin
float
C0373607 (UMLS CUI [1])
Item
Hemoglobin
integer
C0518015 (UMLS CUI [1])
Code List
Hemoglobin
CL Item
Not evaluated  (1)
CL Item
Untransfused  (2)
CL Item
Transfused (3)
Item
Platelets
integer
Code List
Platelets
CL Item
Not evaluated  (1)
CL Item
Untransfused  (2)
CL Item
Transfused (3)
Item
Medication
text
Code List
Medication
CL Item
ATG Origin (ATG Origin)
CL Item
Cyclosporin A (Cyclosporin A)
CL Item
Cyclophosphamide (Cyclophosphamide)
CL Item
Mycophenolate mofetil (Mycophenolate mofetil)
CL Item
G-CSF (G-CSF)
CL Item
Erythropoietin (Erythropoietin)
CL Item
Corticosteroid (Corticosteroid)
CL Item
Androgens (Androgens)
CL Item
Rituximab (Mabthera) (Rituximab (Mabthera))
CL Item
Alemtuzumab (Campath) (Alemtuzumab (Campath))
CL Item
Other (Other)
Medication
Item
If other, please specify
text
Item
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
text
Code List
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
CL Item
Complete remission  (Complete remission )
CL Item
Partial remission (transfusion and growth factor independent) (Partial remission (transfusion and growth factor independent))
CL Item
No response  (No response )
CL Item
Progression  (Progression )
CL Item
Not evaluable (Not evaluable)
CL Item
Other (Other)
CL Item
Unknown (Unknown)
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
Item
if other, please specify
text
Date response evaluated
Item
Date response evaluated
date
SECONDARY CLONAL COMPLICATIONS
Item
SECONDARY CLONAL COMPLICATIONS
boolean
Date of diagnosis of MDS
Item
Date of diagnosis of MDS (if applicable)
date
MDS WHO classification
Item
MDS WHO classification
text
Date of diagnosis of PNH
Item
Date of diagnosis of PNH (if applicable)
date
Size of the PNH clone
Item
Size of the PNH clone
float
Item
Flow cytometry assessment done on
text
Code List
Flow cytometry assessment done on
CL Item
Granulocytes  (Granulocytes )
CL Item
RBC  (RBC )
CL Item
Both (Both)
CL Item
Other (Other)
CL Item
FLWCYTAA  (FLWCYTAA )
CL Item
Not done (Not done)
Clinical manifestations of PNH
Item
Clinical manifestations of PNH
boolean
Date of diagnosis of other
Item
Date of diagnosis of other (if applicable)
date
HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT?
Item
HAS THE PATIENT UNDERGONE AN ADDITIONAL EPISODE OF IMMUNOSUPPRESSIVE TREATMENT? If HSCT registration also, please proceed to “Status before HSCT” on page 6 If only Immunosuppressive treatment continue to follow-up form
boolean
Item Group
FIRST EVIDENCE OF DISEASE WORSENING SINCE LAST HSCT
Item
Relapse or progression
integer
C0035020 (UMLS CUI [1,1])
C1704632 (UMLS CUI [1,2])
Code List
Relapse or progression
CL Item
Previously reported (1)
CL Item
No (2)
CL Item
yes (3)
CL Item
Continuous progression since transplant (4)
CL Item
Unknown (5)
RELAPSE OR PROGRESSION
Item
if yes, date diagnosed
date
Item Group
LAST DISEASE AND PATIENT STATUS
Item
Last Disease Status
text
Code List
Last Disease Status
CL Item
No response (No response)
CL Item
Complete Remission (Complete Remission)
CL Item
Partial Remission (Partial Remission)
CL Item
Relapse/Progression (Relapse/Progression)
Date of PNH test
Item
Date of PNH test
date
Size of the PNH clone
Item
Size of the PNH clone in %
text
Item
Flow cytometry assessment done on
text
Code List
Flow cytometry assessment done on
CL Item
Granulocytes  (Granulocytes )
CL Item
RBC  (RBC )
CL Item
Both (Both)
CL Item
Other (Other)
CL Item
Not done (Not done)
Flow cytometry assessment done on
Item
if other, please specify
text
Clinical manifestations of PNH
Item
Clinical manifestations of PNH
boolean
Item
Has patient or partner become pregnant after this HSCT?
integer
Code List
Has patient or partner become pregnant after this HSCT?
CL Item
Yes  (1)
CL Item
No  (2)
CL Item
Unknown (3)
Item
Survival Status
integer
C1148433 (UMLS CUI [1])
Code List
Survival Status
CL Item
alive (0)
CL Item
dead (1)
Item
Type of score used PERFORMANCE SCORE (if alive)
integer
Code List
Type of score used PERFORMANCE SCORE (if alive)
CL Item
Karnofsky (1)
CL Item
Lansky (2)
Item
Score
integer
C1518965 (UMLS CUI [1])
Code List
Score
CL Item
100 (Normal, NED) (1)
CL Item
10 (Moribund) (10)
CL Item
Not evaluated (11)
CL Item
Unknown (12)
CL Item
90 (Normal activity)  (2)
CL Item
80 (Normal with effort) (3)
CL Item
70 (Cares for self) (4)
CL Item
60 (Requires occasional assistance) (5)
CL Item
50 (Requires assistance) (6)
CL Item
40 (Disabled) (7)
CL Item
30 (Severely disabled) (8)
CL Item
20 (Very sick) (9)
Item
Cause of death (if dead)
integer
C0007465 (UMLS CUI [1])
Code List
Cause of death (if dead)
CL Item
Relapse or progression (1)
CL Item
Secondary malignancy (including lymphoproliferative disease) (2)
CL Item
HSCT related cause  (3)
CL Item
Unknown (4)
CL Item
Other (5)
Cause of death
Item
Other cause of death:please specify
text
C0007465 (UMLS CUI [1])
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): GvHD
text
C0007465 (UMLS CUI [1,1])
C0018133 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): GvHD
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Interstitial Pneumonitis
text
C0007465 (UMLS CUI [1,1])
C0206061 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Interstitial Pneumonitis
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Pulmonary toxicity
text
C0007465 (UMLS CUI [1,1])
C0919924 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Pulmonary toxicity
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Infection
text
C0007465 (UMLS CUI [1,1])
C0009450 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Infection
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Infection:
Item
bacterial viral fungal parasitic unknown
text
Item
Rejection / poor graft function
integer
C0018129 (UMLS CUI [1])
Code List
Rejection / poor graft function
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Veno-Occlusive disease (VOD)
text
C0007465 (UMLS CUI [1,1])
C0948441 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Veno-Occlusive disease (VOD)
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Haemorrhage
text
C0007465 (UMLS CUI [1,1])
C0019080 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Haemorrhage
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Cardiac toxicity
text
C0007465 (UMLS CUI [1,1])
C0876994 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Cardiac toxicity
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Central nervous system toxicity
text
C0007465 (UMLS CUI [1,1])
C3160947 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Central nervous system toxicity
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Gastro intestinal toxicity
text
C0007465 (UMLS CUI [1,1])
C1142499 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Gastro intestinal toxicity
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Skin toxicity
text
C0007465 (UMLS CUI [1,1])
C1167791 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Skin toxicity
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Renal failure
text
C0007465 (UMLS CUI [1,1])
C0035078 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Renal failure
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Item
If dead and HSCT related cause of death, specify (check as many as apppropriate): Multiple organ failure
text
C0007465 (UMLS CUI [1,1])
C0026766 (UMLS CUI [1,2])
Code List
If dead and HSCT related cause of death, specify (check as many as apppropriate): Multiple organ failure
CL Item
No  (No )
CL Item
Unknown (Unknown)
CL Item
Yes (Yes)
Item Group
ADDITIONAL NOTES IF APPLICABLE
COMMENTS
Item
COMMENTS
text
IDENTIFICATION & SIGNATURE
Item
IDENTIFICATION & SIGNATURE
text

Benutzen Sie dieses Formular für Rückmeldungen, Fragen und Verbesserungsvorschläge.

Mit * gekennzeichnete Felder sind notwendig.

Benötigen Sie Hilfe bei der Suche? Um mehr Details zu erfahren und die Suche effektiver nutzen zu können schauen Sie sich doch das entsprechende Video auf unserer Tutorial Seite an.

Zum Video