Data Dictionary - National Registry of Childhood Cancer (RNCCR)

Variable	Description
Personal identification	Preferably a unique ID number, otherwise full name
Date of birth (dd/mm/yyyy)
Sex at birth	Male/female/undetermined
Postal code, zip code	Needed for identification and for geographical based studies
Hospital(s) of diagnosis
Incidence date	According to ENCR recommendations
Basis of the diagnosis	According to ENCR recommendations
Topography (primary site)	According to the latest version of ICD-O*
Laterality (left, right, bilateral)	Laterality should be recorded for all solid cancers in paired organs (salivary gland, nasal cavity, paranasal sinuses, lung, pleura, breast, ovary/fallopian tube, testis, kidney, renal pelvis, ureter, eye and adrenal gland). Bilateral cases in paired organs should be registered separately, except for bilateral cancers of the ovary/fallopian tube, nephroblastoma and neuroblastoma. Laterality is optional for sarcomas and skin cancers of the extremities.
Morphology, including behaviour code	According to the latest version of ICD-O*
Grade (differentiation grade, WHO grade, Gleason grade group)	According to the latest version of ICD-O* and/or WHO
Immunophenotype (T-cell, B-cell, NK-cell)	For lymphoid haematological malignancies
Stage	See table 2 for the recommended stage variables
Prognostic (tumour) factors	Such as ER/PR and Her2 (breast cancer), Breslow thickness (melanoma), HPV-status (oral cavity, cervix, vulva), cytogenetic aberrations (CNS, sarcoma, haematological malignancies), etc. According to ENCR recommendations
Primary treatment	According to ENCR recommendations
Hospital(s) of treatment
Date and site(s) of recurrence/progression	According to ENCR recommendations
Vital status	Needed for the study of survival
Date of death or date of last follow-up (dd/mm/yyyy)
Cause of death	According to the standard of the cause of death registration in the registration area