Database: National Registry of Childhood Cancer (RNCCR) (Romania)
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Sponsor, manager or home institution: Daruieste Aripi Association and Romanian Society of Pediatric Onco-Hematology.
Primary purpose: To compile and maintain a comprehensive database of cancer cases in children and young people in Romania.
Type of information: The information contained in the registry follows the recommendations of ENCR [2]. Furthermore, it includes clinical data and the newest pediatric cancer staging system recommended by the Toronto Consensus [3]. Data refers to people aged between 0 and 14 years.
Available type of information: Available Data Dictionary - National Registry of Childhood Cancer (RNCCR). The variables available to be registered by the sources in the database are: CNP; Name; First name; Date of birth; Age; Sex; County; City; Address; Date of cancer diagnosis; Explication (reason for registering the diagnosis: hospitalization, death, biopsy, etc.); Date of clinical onset; Date of relapse; Reason for reporting; Registration base (data source); Tumor location; Topographical code; Laterality. Histopathological/cytological examination: Behavior; Morphological code; Degree; Cod ICC3 primary; Cod ICC3 category; Cod ICC3 subcategory. Toronto staging: diagnostic class; level 1; level 2. TNM staging for solid tumors not included in Toronto staging: Stadium type; TNM classification. Treatment: Stadium type; TNM classification; Surgery date; Chemotherapy; Radiotherapy; Hormone therapy; Immunotherapy; Other treatments; Transplant; Diagnostic class; Therapeutic protocol; Another therapeutic protocol; Treatment abroad; Type of treatment abroad; Tara; end of therapy date; Response to treatment; Refusal; Reason for refusal; Abandon; Dropout reason). Tracking: Aate of last contact; Status; The last doctor; Death; The main cause; Secondary cause.
Source of information: Reports from pediatric oncologic centers.
Data level: patient level.
Date range: 2009 onwards.
Cancer areas of interest: unknown.
Data access: partially publicly available [4]. Instructions to request data for restricted content [5].
Contact information: Information [6].
