TY - JOUR
T1 - A Harmonized International Database of More Than 10,000 Pediatric Renal Tumor Patients From 30 Years of SIOP-RTSG Studies
AU - Roy, Prakriti
AU - Schut, Ingrid
AU - Graf, Norbert
AU - Verschuur, Arnauld
AU - Chowdhury, Tanzina
AU - Spreafico, Filippo
AU - Brok, Jesper
AU - Ramirez-Villar, Gema L.
AU - de Camargo, Beatriz
AU - Godzinski, Jan
AU - Vujanic, Gordan
AU - Melchior, Patrick
AU - Koolma, Ria
AU - Al-Saadi, Reem
AU - Gessler, Manfred
AU - Duncan, Catriona
AU - Schenk, Jens Peter
AU - Furtwängler, Rhoikos
AU - Bonnange, Helene S.
AU - Metzger, Severine
AU - Baars, Danny
AU - Pritchard-Jones, Kathy
AU - van den Heuvel-Eibrink, Marry M.
AU - van Tinteren, Harm
PY - 2026/4/1
Y1 - 2026/4/1
N2 - 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.
AB - 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.
UR - https://www.scopus.com/pages/publications/105043573996
U2 - 10.1200/CCI-25-00390
DO - 10.1200/CCI-25-00390
M3 - Article
C2 - 42335412
AN - SCOPUS:105043573996
SN - 2473-4276
VL - 10
SP - e2500390
JO - JCO clinical cancer informatics
JF - JCO clinical cancer informatics
IS - 2
ER -