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ID
14636
Description
DOCUMENTED PATHOGENS (Use this table for guidance on the pathogens of interest) Bacteria:S. pneumoniae, Other gram positive (i.e.: other streptococci, staphylococci, listeria …),Haemophilus influenzae, Other gram negative (i.e.: E. coli klebsiella, proteus, serratia, pseudomonas …), Legionella sp, Mycobacteria sp, Other Fungi: Candida sp, Aspergillus sp, Pneumocystis carinii, Other Parasites: Toxoplasma gondii, Other Viruses: HSV, VZV, EBV, CMV, JJV-6, RSV, Other respiratory virus (influenza, parainfluenza, rhinovirus), Adenovirus, HBV, HCV, HIV, Papovavirus, Parvovirus, Other
Keywords
Versions (2)
- 4/25/16 4/25/16 -
- 7/9/16 7/9/16 -
Uploaded on
April 25, 2016
DOI
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License
Creative Commons BY-NC 3.0
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EBMT Inherited Disorders
16pp EBMT Inherited Disorders
- StudyEvent: ODM
Similar models
16pp EBMT Inherited Disorders
- StudyEvent: ODM
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
EBMT Centre Identification Code
Item
EBMT Centre Identification Code (CIC)
text
C0802049 (UMLS CUI [1])
Hospital
Item
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 of contact person
text
C1515258 (UMLS CUI [1])
ContactPersonFaxNumber
Item
Fax
text
C0237753 (UMLS CUI [1,1])
C0027361 (UMLS CUI [1,2])
C0337611 (UMLS CUI [1,3])
C0085205 (UMLS CUI [1,4])
C0027361 (UMLS CUI [1,2])
C0337611 (UMLS CUI [1,3])
C0085205 (UMLS CUI [1,4])
ContactPersonE-mailText
Item
E-mail
text
C1527021 (UMLS CUI [1,1])
C0027361 (UMLS CUI [1,2])
C0013849 (UMLS CUI [1,3])
C0337611 (UMLS CUI [1,4])
C0027361 (UMLS CUI [1,2])
C0013849 (UMLS CUI [1,3])
C0337611 (UMLS CUI [1,4])
Date of this report
Item
Date of this report
date
C1302584 (UMLS CUI [1])
Patient following national / international study / trial
Item
STUDY/TRIAL
text
Item
Patient following national / international study / trial
integer
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
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) Registrations 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])
CL Item
Male (1)
CL Item
Female (2)
ABO Group
Item
ABO Group
text
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
Date of Diagnosis
Item
Date of Diagnosis
date
C2316983 (UMLS CUI [1])
Item
Check the disease for which this transplant was performed
text
C0277554 (UMLS CUI [1])
CL Item
Acute Leukaemia (Acute Leukaemia)
CL Item
Acute Myelogenous Leukaemia (AML) (Acute Myelogenous Leukaemia (AML))
CL Item
Acute Lymphoblastic Leukaemia (ALL) (Acute Lymphoblastic Leukaemia (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 (Chronic Lymphocytic Leukaemia)
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 Tumour (Solid Tumour)
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
Histiocytic disorders (Histiocytic 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
Haemoglobinopathiy (Haemoglobinopathiy)
CL Item
Other diagnosis (Other diagnosis)
Primary Disease Diagnosis
Item
Other diagnosis, specify
text
Item
has the information requested in this section been submitted with a previous HSCT registration?
text
C1514821 (UMLS CUI [1])
Code List
has the information requested in this section been submitted with a previous HSCT registration?
CL Item
Yes: go to `Pre-HSCT treatment` (Yes: go to `Pre-HSCT treatment`)
CL Item
No: Proceed with this section (No: Proceed with this section)
CL Item
primary immune deficiencies (1)
CL Item
Inherited disorders of metabolism (2)
CL Item
Other inherited disorders (3)
CL Item
Familial lymphohystiocytosis (4)
CL Item
Artemis (Artemis)
CL Item
Ligase IV (Ligase IV)
CL Item
Rag-1 or Rag-2 (Rag-1 or Rag-2)
CL Item
T- B- cells SCID, other (T- B- cells SCID, other)
CL Item
T- B- cells SCID, unspecified (T- B- cells SCID, unspecified)
CL Item
Alpha c (Alpha c)
CL Item
JAK 3 (JAK 3)
CL Item
IL-7R alpha (IL-7R alpha)
CL Item
ZAP 70 deficiency (ZAP 70 deficiency)
CL Item
T- B+ cells SCID, other (CD45, CD3 ) (T- B+ cells SCID, other (CD45, CD3 ))
CL Item
T- B+ cells SCID, unspecified (T- B+ cells SCID, unspecified)
CL Item
ADA deficiency (Adenosine deaminase defic.) (ADA deficiency (Adenosine deaminase defic.))
CL Item
PNP (Purine nucleoside phosphorylase defic.) (PNP (Purine nucleoside phosphorylase defic.))
CL Item
Reticular dysgenesis (Reticular dysgenesis)
CL Item
SCID other (SCID other)
SCID (Severe Combined Immune Deficiency)
Item
if other, please specify
text
CL Item
Omenn syndrome (1)
CL Item
CID other (2)
CID (Combined Immune Deficiency)
Item
if other, please specify
text
CL Item
Agranulocytosis (Kostmann) (1)
CL Item
Ataxia telangiectasia (2)
CL Item
Bare lymphocyte syndrome (lack of HLA ag expression) (3)
CL Item
Cartilage hair hypoplasia / dyskeratosis congenita (4)
CL Item
CD40 Ligand (5)
CL Item
Chediak-Higashi syndrome (6)
CL Item
Chronic granulomatous disease (7)
CL Item
DiGeorge syndrome (8)
CL Item
Griscelli syndrome (9)
CL Item
Interferon alpha (10)
CL Item
IPEX syndrome (11)
CL Item
Leukocyte adhesion (12)
CL Item
Wiskott Aldrich syndrome (13)
CL Item
X-linked lymphoproliferative syndrome (Purtilo) (14)
CL Item
Adrenoleukodystrophy (Adrenoleukodystrophy)
CL Item
Aspartyl glucosaminuria (Aspartyl glucosaminuria)
CL Item
B-glucuronidase deficiency (VII) (B-glucuronidase deficiency (VII))
CL Item
Fucosidosis (Fucosidosis)
CL Item
Gaucher disease (Gaucher disease)
CL Item
Glucose storage disease (Glucose storage disease)
CL Item
Hunter syndrome (II) (Hunter syndrome (II))
CL Item
Hurler syndrome (IH) (Hurler syndrome (IH))
CL Item
I-cell disease (I-cell disease)
CL Item
Krabbe disease (globoid leukodystrophy) (Krabbe disease (globoid leukodystrophy))
CL Item
Lesch-Nyhan (HGPRT deficiency) (Lesch-Nyhan (HGPRT deficiency))
CL Item
Mannosidosis (Mannosidosis)
CL Item
Maroteaux-Lamy (VI) (Maroteaux-Lamy (VI))
CL Item
Metachromatic leukodystrophy (Metachromatic leukodystrophy)
CL Item
Morquio (IV) (Morquio (IV))
CL Item
Mucolipidoses, not otherwise specified (Mucolipidoses, not otherwise specified)
CL Item
Mucopolysaccharidosis (V) (Mucopolysaccharidosis (V))
CL Item
Mucopolysaccharidosis, not otherwise specified (Mucopolysaccharidosis, not otherwise specified)
CL Item
Niemann-Pick disease (Type A,B) (Niemann-Pick disease (Type A,B))
CL Item
Niemann-Pick disease (Type C,D,E) (Niemann-Pick disease (Type C,D,E))
CL Item
Neuronal ceriod – lipofuscinosis (Batten disease) (Neuronal ceriod – lipofuscinosis (Batten disease))
CL Item
Polysaccharide hydrolase abnormalities, unspecified (Polysaccharide hydrolase abnormalities, unspecified)
CL Item
Sanfilippo (III) (Sanfilippo (III))
CL Item
Scheie syndrome (IS) (Scheie syndrome (IS))
CL Item
Wolman disease (Wolman disease)
CL Item
Other, (Other,)
Inherited disorders of metabolism
Item
if other, please specify
text
CL Item
Glanzmann (1)
CL Item
Platelet defect, not otherwise specified (2)
CL Item
Osteopetrosis (3)
CL Item
Osteoclast defect, not otherwise specified (4)
CL Item
Other, (5)
CL Item
no (1)
CL Item
yes (2)
CL Item
unknown (3)
CL Item
DNA (1)
CL Item
PBL (2)
CL Item
B-cell line (3)
CL Item
Fibroblasts (4)
CL Item
Other (5)
CL Item
Autosomal recessive proven (Autosomal recessive proven)
CL Item
X-linked proven (X-linked proven)
CL Item
Autosomal recessive suspected (Autosomal recessive suspected)
CL Item
X-linked suspected (X-linked suspected)
CL Item
unknown (unknown)
CL Item
Normal (1)
CL Item
Abnormal (2)
CL Item
Not done or failed (3)
CL Item
Unknown (4)
CL Item
Alpha c (1)
CL Item
JAK 3 (2)
CL Item
Rag-1 (3)
CL Item
Rag-2 (4)
CL Item
ADA (5)
CL Item
Allele 1* (Allele 1*)
CL Item
Allele 2 (Allele 2)
CL Item
Allele 1 (Allele 1)
CL Item
Allele 2 (Allele 2)
Date of HSCT
Item
Date of HSCT
date
C2584899 (UMLS CUI [1])
HAEMATOLOGICAL VALUES
Item
Platelets (109/L)
float
HAEMATOLOGICAL VALUES
Item
White Blood Cells (109/L)
float
HAEMATOLOGICAL VALUES
Item
Lymphocytes (109/L)
float
HAEMATOLOGICAL VALUES
Item
T cells (CD3+) (109/L)
float
HAEMATOLOGICAL VALUES
Item
CD4+ cells (109/L)
float
HAEMATOLOGICAL VALUES
Item
CD8+ cells (109/L)
float
HAEMATOLOGICAL VALUES
Item
NK cells (CD56+) (109/L)
float
HAEMATOLOGICAL VALUES
Item
B cells (109/L)
float
HAEMATOLOGICAL VALUES
Item
Granulocytes (109/L)
float
HAEMATOLOGICAL VALUES
Item
Reticulocytes (109/L)
float
CL Item
Absent (1)
CL Item
Partial (2)
CL Item
Normal (3)
CL Item
Not evaluated (4)
CL Item
Absent (1)
CL Item
Partial (2)
CL Item
Normal (3)
CL Item
Not evaluated (4)
CL Item
Absent (1)
CL Item
Partial (2)
CL Item
Normal (3)
CL Item
Not evaluated (4)
IMMUNOGLOBULINS (B-CELL FUNCTION)
Item
Serum IgM (g/L)
float
CL Item
Not evaluated (1)
IMMUNOGLOBULINS (B-CELL FUNCTION)
Item
Serum IgA (g/L)
float
CL Item
Not evaluated (1)
IMMUNOGLOBULINS (B-CELL FUNCTION)
Item
Serum IgG (g/L)
float
CL Item
Not evaluated (1)
IMMUNOGLOBULINS (B-CELL FUNCTION)
Item
Serum IgE (g/L)
float
CL Item
Not evaluated (1)
CL Item
Absent (1)
CL Item
Decreased (2)
CL Item
Normal or elevated (3)
CL Item
Not evaluated (4)
CL Item
Absent (1)
CL Item
Decreased (2)
CL Item
Normal or elevated (3)
CL Item
Not evaluated (4)
CL Item
no (1)
CL Item
yes (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
No (1)
CL Item
Yes (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
No (1)
CL Item
Yes (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
No (1)
CL Item
Yes (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
No (1)
CL Item
Yes (2)
CL Item
Not evaluated (3)
CL Item
unknown (4)
CL Item
no (1)
CL Item
yes (2)
CL Item
unknown (3)
CL Item
Mycobacteria (1)
CL Item
Pneumocystis carinii (2)
CL Item
Virus (3)
CL Item
Bacteria (4)
CL Item
Cryptosporidia (5)
CL Item
Fungi, other (6)
CL Item
Unknown (7)
CL Item
Other (8)
Septicemia
Item
if other
text
CL Item
Mycobacteria (1)
CL Item
Pneumocystis carinii (2)
CL Item
Virus (3)
CL Item
Bacteria (4)
CL Item
Cryptosporidia (5)
CL Item
Fungi, other (6)
CL Item
Unknown (7)
CL Item
Other (8)
CL Item
Mycobacteria (1)
CL Item
Pneumocystis carinii (2)
CL Item
Virus (3)
CL Item
Bacteria (4)
CL Item
Cryptosporidia (5)
CL Item
Fungi, other (6)
CL Item
Unknown (7)
CL Item
Other (8)
CL Item
Mycobacteria (1)
CL Item
Pneumocystis carinii (2)
CL Item
Virus (3)
CL Item
Bacteria (4)
CL Item
Cryptosporidia (5)
CL Item
Fungi, other (6)
CL Item
Unknown (7)
CL Item
Other (8)
Skin infection
Item
if other, please specify
text
CL Item
Mycobacteria (1)
CL Item
Pneumocystis carinii (2)
CL Item
Virus (3)
CL Item
Bacteria (4)
CL Item
Cryptosporidia (5)
CL Item
Fungi, other (6)
CL Item
Unknown (7)
CL Item
Other (8)
Liver
Item
if other, please specify
text
CL Item
Mycobacteria (1)
CL Item
Pneumocystis carinii (2)
CL Item
Virus (3)
CL Item
Bacteria (4)
CL Item
Cryptosporidia (5)
CL Item
Fungi, other (6)
CL Item
Unknown (7)
CL Item
Other (8)
Bone or joints
Item
if other, please specify
text
CL Item
Mycobacteria (1)
CL Item
Pneumocystis carinii (2)
CL Item
Virus (3)
CL Item
Bacteria (4)
CL Item
Cryptosporidia (5)
CL Item
Fungi, other (6)
CL Item
Unknown (7)
CL Item
Other (8)
Gut infection
Item
if other, please specify
text
CL Item
Mycobacteria (1)
CL Item
Pneumocystis carinii (2)
CL Item
Virus (3)
CL Item
Bacteria (4)
CL Item
Cryptosporidia (5)
CL Item
Fungi, other (6)
CL Item
Unknown (7)
CL Item
Other (8)
Undetermined
Item
if other, please specify
text
CL Item
Mycobacteria (1)
CL Item
Pneumocystis carinii (2)
CL Item
Virus (3)
CL Item
Bacteria (4)
CL Item
Cryptosporidia (5)
CL Item
Fungi, other (6)
CL Item
Unknown (7)
CL Item
Other (8)
Other infections
Item
if other, please specify
text
CL Item
Absent (1)
CL Item
Present (2)
CL Item
Not evaluated (3)
CL Item
Unknown (4)
CL Item
Gut (Gut)
CL Item
Liver (Liver)
CL Item
Skin (Skin)
CL Item
no (no)
CL Item
yes (yes)
CL Item
unknown (unknown)
CL Item
Blood transfusion (1)
CL Item
Maternal engraftment (2)
CL Item
unknown (3)
Maternal engraftment
Item
Number of maternal T cells
float
CL Item
HLA typing (HLA typing)
CL Item
Microsatellite (Microsatellite)
CL Item
IL2 T cell line (IL2 T cell line)
CL Item
Cytogenetics (Cytogenetics)
CL Item
no (no)
CL Item
yes (yes)
CL Item
unknown (unknown)
CL Item
NONE (NONE)
CL Item
< 20 UNITS (< 20 UNITS)
CL Item
20-50 UNITS (20-50 UNITS)
CL Item
> 50 UNITS (> 50 UNITS)
CL Item
UNKNOWN (UNKNOWN)
CL Item
NONE (1)
CL Item
< 20 UNITS (2)
CL Item
20-50 UNITS (3)
CL Item
> 50 UNITS (4)
CL Item
UNKNOWN (5)
ADDITIONAL DISEASE TREATMENT
Item
ADDITIONAL DISEASE TREATMENT
boolean
CL Item
Planned (planned before HSCT took place) (1)
CL Item
Not planned (for relapse/progression or persistent disease) (2)
CL Item
Cured (1)
CL Item
Improved (2)
CL Item
No change (3)
CL Item
Worse (4)
CL Item
Unknown (5)
Date of assessment
Item
As close to the 3rd month interval as possible)
date
CL Item
Full (Full)
CL Item
Mixed (Mixed)
CL Item
Absent (Absent)
CL Item
Absent (Absent)
T-cell Full
Item
Date achieved
date
CL Item
Full (1)
CL Item
Partial (2)
CL Item
Absent (3)
CL Item
Not evaluated (4)
CL Item
Full (1)
CL Item
Partial (2)
CL Item
Absent (3)
CL Item
Not evaluated (4)
CL Item
Full (1)
CL Item
Partial (2)
CL Item
Absent (3)
CL Item
Not evaluated (4)
CL Item
Full (1)
CL Item
Partial (2)
CL Item
Absent (3)
CL Item
Not evaluated (4)
CL Item
Full (1)
CL Item
Partial (2)
CL Item
Absent (3)
CL Item
Not evaluated (4)
CL Item
Full (1)
CL Item
Partial (2)
CL Item
Absent (3)
HAEMATOLOGICAL RECONSTITUTION
Item
Haemoglobin (g/dL)
float
HAEMATOLOGICAL RECONSTITUTION
Item
Platelets (109/L)
float
HAEMATOLOGICAL RECONSTITUTION
Item
T-cells (CD3+) (109/L)
float
HAEMATOLOGICAL RECONSTITUTION
Item
B-cells (109/L)
float
HAEMATOLOGICAL RECONSTITUTION
Item
Granulocytes (109/L)
float
CL Item
Absent (1)
CL Item
Partial (2)
CL Item
Normal (3)
CL Item
Not evaluated (4)
CL Item
Absent (Absent)
CL Item
Partial (Partial)
CL Item
Normal (Normal)
CL Item
Not evaluated (Not evaluated)
B-cells
Item
Serum IgM (g/L)
float
CL Item
Not evaluated (1)
B-cells
Item
Serum IgA (g/L)
float
CL Item
Not evaluated (1)
B-cells
Item
Serum IgG (g/L)
float
CL Item
Not evaluated (1)
B-cells
Item
Serum IgE (g/L)
float
CL Item
Not evaluated (1)
CL Item
Absent (1)
CL Item
Decreased (2)
CL Item
Normal or elevated (3)
CL Item
Not evaluated (4)
Item
ON-GOING TREATMENT FOR RECONSTITUTION AT 100 DAYS
integer
Code List
ON-GOING TREATMENT FOR RECONSTITUTION AT 100 DAYS
CL Item
no (1)
CL Item
yes (2)
CL Item
unknown (3)
CL Item
Patient still receiving IV Immunoglobulins (Patient still receiving IV Immunoglobulins)
CL Item
Growth factors (cytokines) administered to the patient? (Growth factors (cytokines) administered to the patient?)
CL Item
no (no)
CL Item
yes (yes)
CL Item
unknown (unknown)
Item
Growth factors (cytokines) administered to the patient?
text
Code List
Growth factors (cytokines) administered to the patient?
CL Item
no (no)
CL Item
yes (yes)
CL Item
unknown (unknown)
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))
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])
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
Hospital Unique Patient Number
Item
Hospital Unique Patient Number
text
C2348585 (UMLS CUI [1])
Initials
Item
First name(s)_surname(s)
text
C2986440 (UMLS CUI [1])
PersonBirthDate
Item
Date of Birth
date
C0011008 (UMLS CUI [1,1])
C0027361 (UMLS CUI [1,2])
C0005615 (UMLS CUI [1,3])
C0027361 (UMLS CUI [1,2])
C0005615 (UMLS CUI [1,3])
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])
C0011008 (UMLS CUI [1,2])
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
Acute Graft versus Host Disease (aGvHD) - Grade
integer
C0856825 (UMLS CUI [1,1])
C0441800 (UMLS CUI [1,2])
C0441800 (UMLS CUI [1,2])
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)
CL Item
New onset (1)
CL Item
Recurrent (2)
CL Item
Persistent (3)
CL Item
Tapering (1)
CL Item
DLI (2)
CL Item
Unexplained (3)
Date onset of this episode
Item
Date onset of this episode (if new or recurrent)
date
C0574845 (UMLS CUI [1])
CL Item
Not applicable (1)
Item
Stage skin
integer
C0856825 (UMLS CUI [1,1])
C1306673 (UMLS CUI [1,2])
C1306673 (UMLS CUI [1,3])
C1306673 (UMLS CUI [1,2])
C1306673 (UMLS CUI [1,3])
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 liver
integer
C0856825 (UMLS CUI [1,1])
C1306673 (UMLS CUI [1,2])
C0023884 (UMLS CUI [1,3])
C1306673 (UMLS CUI [1,2])
C0023884 (UMLS CUI [1,3])
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])
C1306673 (UMLS CUI [1,2])
C0021853 (UMLS CUI [1,3])
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)
CL Item
No (1)
CL Item
Yes (2)
Date of Resolution
Item
If resolution, specify date:
date
C0011008 (UMLS CUI [1])
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
First episode (First episode)
CL Item
Recurrence (Recurrence)
CL Item
Present continuously since last reported episode (Present continuously since last reported episode)
CL Item
Resolved (Resolved)
Date of onset
Item
Date of onset
date
C0574845 (UMLS CUI [1])
Item
If present continously since last report, specify cGvHD gade:
text
C0867389 (UMLS CUI [1,1])
C0441799 (UMLS CUI [1,2])
C0441799 (UMLS CUI [1,2])
CL Item
Limited (Limited)
CL Item
Extensive (Extensive)
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)
Organs affected
Item
if other, please specify
text
Date of Resolution
Item
If resolved, specify the date of resolution:
date
C1514893 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
C0011008 (UMLS CUI [1,2])
Infection related complications
Item
Infection related complications
boolean
C0009450 (UMLS CUI [1,1])
C0009566 (UMLS CUI [1,2])
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
Septic shock
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
ARDS
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Multiorgan failure due to infection
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Pneumonia
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Hepatitis
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
CNS infection
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Gut infection
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Skin infection
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Cystitis
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary
text
Retinitis
Item
Pathogen Use the list of pathogens listed after this table for guidance. Use “unknown” if necessary.
text
Other
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.
text
Septic shock
Item
Date Provide different dates for different episodes of the same complication if applicable.
text
ARDS
Item
Date Provide different dates for different episodes of the same complication if applicable
text
Multiorgan failure due to infection
Item
Date Provide different dates for different episodes of the same complication if applicable.
text
Pneumonia
Item
Date Provide different dates for different episodes of the same complication if applicable.
text
Hepatitis
Item
Date Provide different dates for different episodes of the same complication if applicable.
text
CNS infection
Item
Date Provide different dates for different episodes of the same complication if applicable.
text
Gut infection
Item
Date Provide different dates for different episodes of the same complication if applicable.
text
Skin infection
Item
Date Provide different dates for different episodes of the same complication if applicable.
text
Cystitis
Item
Date Provide different dates for different episodes of the same complication if applicable.f
text
Retinitis
Item
Retinitis
text
Other
Item
Date Provide different dates for different episodes of the same complication if applicable.
text
Non infection related complications
Item
Non infection related complications
boolean
C0009566 (UMLS CUI [1])
Item
Specify: Idiopathic pneumonia syndrome
text
C1504431 (UMLS CUI [1])
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Unknown (Unknown)
Idiopathic pneumonia syndrome
Item
Idiopathic pneumonia syndrome
date
CL Item
Yes (Yes)
CL Item
No (No )
CL Item
Unknown (Unknown)
VOD
Item
VOD
date
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
Cataract
Item
Cataract
date
Item
Specify: Haemorrhagic cystitis, non infectious
text
C0085692 (UMLS CUI [1])
CL Item
Yes (Yes )
CL Item
No (No )
CL Item
Unknown (Unknown)
Haemorrhagic cystitis, non infectious
Item
Haemorrhagic cystitis, non infectious
date
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
ARDS, non infectious
Item
ARDS, non infectious
date
CL Item
yes (1)
CL Item
no (2)
CL Item
unknown (3)
Multiorgan failure, non infectious
Item
Multiorgan failure, non infectious
date
Item
Specify: HSCT-associated microangiopathy
text
C0155765 (UMLS CUI [1])
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
HSCT-associated microangiopathy
Item
HSCT-associated microangiopathy
date
Item
Specify: Renal failure requiring dialysis
text
C0035078 (UMLS CUI [1])
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
Renal failure requiring dialysis
Item
Renal failure requiring dialysis
date
Item
Specify: Haemolytic anaemia due to blood group
text
C0002878 (UMLS CUI [1])
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
Haemolytic anaemia due to blood group
Item
date
CL Item
Yes (Yes)
CL Item
No (No)
CL Item
Unknown (Unknown)
Aseptic bone necrosis
Item
Aseptic bone necrosis
date
Other
Item
Please mention if other:
text
C0205394 (UMLS CUI [1])
Item Group
GRAFT ASSESSMENT AND HAEMOPOIETIC CHIMAERISM
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Not evaluated (Not evaluated)
CL Item
95%) (Full (donor >)
CL Item
Mixed (partial) (Mixed (partial))
CL Item
95%) (Autologuos reconstitution (recipient >)
CL Item
Aplasia (Aplasia)
CL Item
Not evaluated (Not evaluated)
Date of Test
Item
Date of Test
date
C0024671 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
C0011008 (UMLS CUI [1,2])
Identification
Item
Identification of donor or Cord Blood Unit given by the centre
text
C1718162 (UMLS CUI [1])
Number in the infusion order
Item
Number in the infusion order (if applicable)
text
C0237753 (UMLS CUI [1])
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-Cells
Item
Cell type on which test was performed (% Donor cells): T-Cells
float
C0039194 (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 - value
Item
Cell type on which test was performed (% Donor cells): Other
float
C0449475 (UMLS CUI [1,1])
C1522609 (UMLS CUI [1,2])
C1522609 (UMLS CUI [1,2])
CL Item
FISH (FISH)
CL Item
Molecular (Molecular)
CL Item
Cytogenetic (Cytogenetic)
CL Item
ABO group (ABO group)
CL Item
Other (Other)
CL Item
unknown (unknown)
Specification other labaratory tests
Item
Test used: If other, specify:
text
C0022885 (UMLS CUI [1,1])
C2348235 (UMLS CUI [1,2])
C2348235 (UMLS CUI [1,2])
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)
Date of Diagnosis
Item
Date of Diagnosis
date
C2316983 (UMLS CUI [1])
CL Item
AML (1)
CL Item
MDS (2)
CL Item
Lymphoproliferative disorder (3)
CL Item
other (4)
Diagnose
Item
if other diagnosis
text
C0011900 (UMLS CUI [1])
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
Treatment given since last report
Item
if yes, date started
date
Item
If yes: Cellular therapy (One cell therapy regimen is defined as any number of infusions given within 10 weeks for the same indication. If more than one regimen of cell therapy has been given since last report, copy this section and complete it as many times as necessary.)
integer
C0302189 (UMLS CUI [1])
Code List
If yes: Cellular therapy (One cell therapy regimen is defined as any number of infusions given within 10 weeks for the same indication. If more than one regimen of cell therapy has been given since last report, copy this section and complete it as many times as necessary.)
CL Item
No (1)
CL Item
Yes (Mark disease status before this cellular therapy) (2)
CL Item
Unknown (3)
CL Item
CR (1)
CL Item
Not in CR (2)
CL Item
Not evaluated (3)
CL Item
Donor lymphocyte infusion (DLI) (1)
CL Item
Mesenchymal cells (2)
CL Item
Other (3)
CL Item
Unknown (4)
Type of cells
Item
if other, please specify
text
CL Item
Number (1)
CL Item
Not evaluated (2)
CL Item
Unknown (3)
Item
If DLI, specify the number of cells infused by type: CD 34+
text
C3538723 (UMLS CUI [1])
CL Item
Evaluated (Evaluated)
CL Item
Not Evaluated (Not Evaluated)
CL Item
Unknown (Unknown)
CL Item
Evaluated (Evaluated )
CL Item
Not evaluated (Not evaluated)
CL Item
Unknown (Unknown)
CL Item
Number (1)
CL Item
Not evaluated (2)
CL Item
Unknown (3)
Chronological number
Item
Chronological number of this cell therapy for this patient
float
C2348184 (UMLS CUI [1])
Item
Indication (check all that apply)
text
C3146298 (UMLS CUI [1,1])
C0302189 (UMLS CUI [1,2])
C0302189 (UMLS CUI [1,2])
CL Item
Planned/ protocol (Planned/ protocol)
CL Item
Treatment for disease (Treatment for disease)
CL Item
Prophylactic (Prophylactic)
CL Item
Mixed chimaerism (Mixed chimaerism)
CL Item
Treatment of GvHD (Treatment of GvHD)
CL Item
Treatment viral infection (Treatment viral infection)
CL Item
Loss/decreased chimaerism (Loss/decreased chimaerism)
CL Item
Treatment PTLD, EBV, lymphoma (Treatment PTLD, EBV, lymphoma)
CL Item
Other (Other)
Indication
Item
if other indication, 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])
C0750480 (UMLS CUI [1,2])
Item
Acute Graft versus Host Disease (after this infusion but before any further infusion/ transplant) Maximum grade:
text
C0856825 (UMLS CUI [1])
Code List
Acute Graft versus Host Disease (after this infusion but before any further infusion/ transplant) Maximum grade:
CL Item
grade 0 (absent) (grade 0 (absent))
CL Item
grade 1 (grade 1)
CL Item
grade 2 (grade 2)
CL Item
grade 3 (grade 3)
CL Item
grade 4 (grade 4)
CL Item
present, grade unknown (present, grade unknown)
Item
Disease treatment (apart from donor cell infusion or other type of cell therapy)
integer
C0087111 (UMLS CUI [1])
Code List
Disease treatment (apart from donor cell infusion or other type of cell therapy)
CL Item
No (1)
CL Item
Yes: Planned (planned before HSCT took place) (2)
CL Item
Yes: Not planned (for relapse/progression or persistent disease) (3)
CL Item
Cured (1)
CL Item
Improved (2)
CL Item
Unchanged (3)
CL Item
Worse (4)
Item
Has patient or partner become pregnant after this HSCT?
text
C0032961 (UMLS CUI [1])
CL Item
No (No)
CL Item
Yes (Yes)
CL Item
Unknown (Unknown)
CL Item
alive (0)
CL Item
dead (1)
CL Item
Karnofsky (1)
CL Item
Lansky (2)
CL Item
100 (Normal, NED) (1)
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)
CL Item
10 (Moribund) (10)
CL Item
Not evaluated (11)
CL Item
Unknown (12)
CL Item
Relapse or progression (Relapse or progression)
CL Item
Secondary malignancy (including lymphoproliferative disease) (Secondary malignancy (including lymphoproliferative disease))
CL Item
HSCT related cause (HSCT related cause )
CL Item
Unknown (Unknown )
CL Item
Other (Other)
Cause of death
Item
Other cause of death:please specify
text
C0007465 (UMLS CUI [1])
CL Item
GvHD (1)
CL Item
Interstitial pneumonitis (2)
CL Item
Pulmonary toxicity (3)
CL Item
Infection bacterial (4)
CL Item
Infection viral (5)
CL Item
Infection fungal (6)
CL Item
Infection parasitic (7)
CL Item
Infection unknown (8)
CL Item
Rejection / poor graft function (9)
CL Item
Veno-occlusive disease (VOD) (10)
CL Item
Haemorrhage (11)
CL Item
Cardiac toxicity (12)
CL Item
Central nervous system toxicity (13)
CL Item
Gastro intestinal toxicity (14)
CL Item
Skin toxicity (15)
CL Item
Renal failure (16)
CL Item
Multiple organ failure (17)
CL Item
Other (18)
COMMENTS
Item
COMMENTS
text
Identification
Item
Identification
text
C0205396 (UMLS CUI [1])