GENERAL INFORMATION
Unique Identification Code (UIC)
text
Hospital Unique Patient Number or Code
text
Initials
text
Date of birth
date
Sex
text
ABO Group
integer
Rh factor
integer
GENERAL INFORMATION
Date of diagnosis
date
Primary Disease Diagnosis
text
BONE MARROW FAILURE SYNDROME (INCLUDING APLASTIC ANAEMIA)
SUBCLASSIFICATION
Acquired
boolean
Aplastic anaemia
integer
Pure red cell aplasia (non constitutional PRCA)
boolean
Paroxysmal nocturnal haemoglobinuria (PNH)
boolean
Haemolytic
boolean
Aplastic
boolean
Thrombotic
boolean
Pure white cell aplasia
boolean
Amegakaryocytic thrombocytopenia (non constitutional)
boolean
Genetic
boolean
Fanconi
boolean
FANC complementation group
integer
Diamond-Blackfan (congenital / constitutional PRCA)
boolean
Shwachman-Diamond Syndrome
boolean
Dyserythropoietic Anaemia
boolean
Dyskeratosis congenita
boolean
Amegakaryocytic thrombocytopenia
boolean
ETIOLOGY
integer
CYTOGENETICS
Chromosome analysis
text
CYTOGENETICS If done: Technique used
integer
Number of metaphases with anomalies
integer
number of metaphases examined
integer
trisomy 8
integer
trisomy 3
integer
Other or associated abnormalities (specify)
integer
Chromosomal breakage test
integer
HAEMATOLOGICAL VALUES
Haemoglobin
float
Platelets
float
Neutrophils
integer
Reticulocytes
float
Ferritin
float
Haemoglobin
integer
Platelets
integer
COMPLICATIONS
PNH TESTS
Date of PNH test
date
PNH diagnostics by flow cytometry
integer
Size of the PNH
integer
Flow cytometry assessment done on
integer
(if type of test unknown, write “unknown” here)
integer
PNH diagnostics by other test
integer
Clinical manifestations of PNH
boolean
FIRST IMMUNOSUPPRESSIVE TREATMENT EPISODE
WAS THE PATIENT TREATED BEFORE THE HSCT PROCEDURE?
integer
FIRST TREATMENT EPISODE FOR THIS REGISTRATION
date
SEQUENTIAL NUMBER
integer
IF 1ST TREATMENT EPISODE FOR THE PATIENT EVER
NUMBER OF TRANSFUSIONS BEFORE HSCT
text
RBC irradiated
integer
Platelets
integer
Platelets irradiated
integer
IF PATIENT HAS BEEN TREATED BEFORE
Haemoglobin
integer
Platelets
float
Platelets
integer
Neutrophils
integer
Reticulocytes
float
Ferritin
float
REASON FOR THIS TREATMENT
integer
Medication
integer
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
integer
Date response evaluated
date
SECONDARY CLONAL COMPLICATIONS
boolean
Date of diagnosis of MDS
date
MDS WHO classification
integer
Date of diagnosis of PNH
date
Size of the PNH clone
float
Flow cytometry assessment done on
integer
Clinical manifestations of PNH
boolean
If HSCT registration also, please proceed to “Status before HSCT” on page 6 If only Immunosuppressive treatment continue to follow-up form
boolean
ADDITIONAL IMMUNOSUPPRESSIVE TREATMENT EPISODE
Date treatment started
date
SEQUENTIAL NUMBER OF THIS TREATMENT EPISODE
text
REASON FOR THIS TREATMENT
text
REASON FOR THIS TREATMENT
text
Haemoglobin
integer
Platelets
float
Platelets
integer
Neutrophils
integer
Reticulocytes
float
Ferritin
float
REASON FOR THIS TREATMENT
integer
Medication
integer
RESPONSE TO THIS IMMUNOSUPPRESSIVE TREATMENT EPISODE
integer
Date response evaluated
date
SECONDARY CLONAL COMPLICATIONS
boolean
Date of diagnosis of MDS
date
MDS WHO classification
integer
Date of diagnosis of PNH
date
Size of the PNH clone
float
Flow cytometry assessment done on
integer
Clinical manifestations of PNH
boolean
If HSCT registration also, please proceed to “Status before HSCT” on page 6 If only Immunosuppressive treatment continue to follow-up form
boolean
STATUS AT HSCT
Date of HSCT
date
Chromosome analysis
integer
Chromosome analysis
integer
Number of metaphases with anomalies
integer
number of metaphases examined
integer
Chromosome analysis
text
Other or associated abnormalities (specify)
text
Haemoglobin
float
Platelets
float
Neutrophils
integer
Reticulocytes
float
Ferritin
float
Haemoglobin
integer
Platelets
integer
Haemorrhages
integer
Resistance to random platelets
integer
Systemic infection
integer
Date of PNH test
date
PNH diagnostics by flow cytometry
integer
Size of the PNH
integer
Flow cytometry assessment done on
integer
(if type of test unknown, write “unknown” here)
integer
PNH diagnostics by other test
integer
Clinical manifestations of PNH
boolean
NUMBER OF TRANSFUSIONS BEFORE HSCT
text
RBC irradiated
integer
Platelets
integer
Platelets irradiated
integer
ADDITIONAL TREATMENT POST-HSCT
BEST DISEASE RESPONSE AT 100 DAYS POST-HSCT
BEST RESPONSE AT 100 DAYS AFTER HSCT
integer
BEST RESPONSE AT 100 DAYS AFTER HSCT
integer
Date response evaluated
date
FORMS TO BE FILLED IN