Year 2014 – ongoing
Age 0 – 25 years (cases)
# > 700 as of September 2017
Time Point Diagnosis/
Treatment Post-treament/
Presenting signs and symptoms (including age at presentation) M
Biopsy report(s) M M M M
Diagnosis (including histological diagnosis, stage and risk classification) M 1 M 1
Method of diagnosis (e.g. presentation, histology, imaging, genetic) M M
Date of diagnosis M
Family history of disorder M
Pathology report summary M M
Reason for hospital admission M M M M
Medical procedures due to condition M M M M
Treatment course (type of treatment, clinical trial and treatment arm status)   M M M
Date of surgery/procedure M  M M M
Disease response status (complete, partial, very good partial)   M M M
Patient status (alive, alive with disease, died of disease, lost to follow up)   M M M
Long term disease status (1, 3, 5 and 10 years post diagnosis, if applicable)   M M
Clinical outcome (including treatment response)   M M M
Date of relapse or progression   M M
Deceased status (date and cause of death) M M M M
Post mortem performed M M M M
Specimen processing (e.g. DNA extraction, cryopreserved cells from
solid tumours, BMMCs from bone marrow)
Cell line generation (optional) X X X X
Induced pluripotent stem cell (iPSC) line generation (optional) X X X X

Featured measurements

ICD-10: International Classification of Diseases - version 10


1 Diagnoses are classified based on ICD-10


A = Administration report abstraction
C = Index child report (reporting on others)
L = Linkage (to other databases)
M = Medical records data abstraction
O = Observation/direct assessment
N = Nurse report
P = Parent/primary caregiver report
Pe = Peer report
S = Self report
T = Teacher report
X = Undefined
X BF = Pertaining to biological father
X BM = Pertaining to biological mother
C = Pertaining to index child
X F = Pertaining to father
X Fam = Pertaining to family
X G = Pertaining to grandparent(s)
X M = Pertaining to mother
X P = Pertaining to parent(s)
X Pa = Pertaining to partner
X Pe = Pertaining to peers
X Pr = Pertaining to primary caregiver
X Si = Pertaining to sibling(s)