Data Dictionary - National Registry of Childhood Cancer (RNCCR)
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Overview of the database
| 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 |
Type of cancer
| Type of cancer | Recommended stage variables | Remarks |
|---|---|---|
| Solid cancers in adults | TNM classification of malignant tumours (UICC) | This includes (y)cTNM and (y)pTNM (if applicable). Essential TNM may be an alternative for poorly resourced registries. |
| Solid cancers in adults for which TNM is not applicable (excluding tumours of the central nervous system) | Extent of disease | Extent of disease should be classified as follows: Localized disease, Locally advanced disease (invasion of neighbouring organs), Regional disease (spread of the tumour to regional lymph nodes), Metastatic disease. |
| Paediatric tumours | Tier 2 of the Toronto consensus principles and guidelines | Tier 1 may be an alternative for poorly resourced registries. |
| Lymphoma | Lugano classification | The Lugano classification is an updated version of the Ann Arbor classification. |
| Haematological malignancies | International prognostic scoring systems | The scoring system is different for each haematological malignancy. For example, the IPI-score for diffuse large B-cell lymphoma requires information on age, Ann Arbor stage, performance status, serum LDH and extranodal involvement. |
