JCO clinical cancer informatics · 2026
A Harmonized International Database of More Than 10,000 Pediatric Renal Tumor Patients From 30 Years of SIOP-RTSG Studies.
СтатьяНазвание и аннотация: Перевод в очереди
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Roy Prakriti, Schut Ingrid, Graf Norbert, Verschuur Arnauld, Chowdhury Tanzina, Spreafico Filippo, Brok Jesper, Ramirez-Villar Gema L, de Camargo Beatriz, Godzinski Jan, Vujanic Gordan, Melchior Patrick, Koolma Ria, Al-Saadi Reem, Gessler Manfred, Duncan Catriona, Schenk Jens-Peter, Furtwängler Rhoikos, Bonnange Helene S, Metzger Severine, Baars Danny, Pritchard-Jones Kathy, van den Heuvel-Eibrink Marry M, van Tinteren Harm
Аннотация
BACKGROUND AND SCOPE: Historical data sources for rare cancers are valuable for data-driven research. The International Society of Pediatric Oncology Renal Tumors Study Group (SIOP-RTSG) has been conducting clinical research on pediatric renal tumors for more than 50 years. Since 1993, data have been collected across multiple countries, using standardized paper-based case report forms that were digitally transcribed into electronic databases. Until 2019, prospectively collected data are present in nine different electronic sources from three consecutive clinical studies. More than 10,000 patient cases of kidney cancer in children are registered in totality. However, the necessary merging of numerous sources to answer a research question is repetitive, time consuming, and unsustainable in the long term.
SOLUTION: By mapping and formatting the structure of these nine databases, a single database was created that was similar in design to the prospective study database. This allows the data from the past and current studies to be accessed and queried efficiently with standardized syntax and reports.
EVALUATION: We validated this new database by reviewing whether uploads were complete and successful, mapped items were coded correctly, or discrepancy appeared in the export. Comparisons with retrospective reports were made to ensure the datasets were reproducible.
RELEVANCE: Researchers have access to a large number of patients through this validated aggregated database. Data maintenance and extraction is efficient, and it offers the possibility to complete missing data directly into the central database. This ultimately ensures long-term availability in a secure, flexible, and responsible manner, in accordance with FAIR principles.
HOW TO ACCESS/USE: Researchers can send questions to SIOP-RTSG and, if necessary, gain access to the database after short training. Access granted would depend on user's role.
SOLUTION: By mapping and formatting the structure of these nine databases, a single database was created that was similar in design to the prospective study database. This allows the data from the past and current studies to be accessed and queried efficiently with standardized syntax and reports.
EVALUATION: We validated this new database by reviewing whether uploads were complete and successful, mapped items were coded correctly, or discrepancy appeared in the export. Comparisons with retrospective reports were made to ensure the datasets were reproducible.
RELEVANCE: Researchers have access to a large number of patients through this validated aggregated database. Data maintenance and extraction is efficient, and it offers the possibility to complete missing data directly into the central database. This ultimately ensures long-term availability in a secure, flexible, and responsible manner, in accordance with FAIR principles.
HOW TO ACCESS/USE: Researchers can send questions to SIOP-RTSG and, if necessary, gain access to the database after short training. Access granted would depend on user's role.