International neuroblastoma risk group consortium: a model of a networking for rare cancers

Abstract

It is critical to share knowledge and harmonize approaches to optimize progress in rare cancers. The International Neuroblastoma Risk Group (INRG) Task Force was formed by the four major neuroblastoma cooperative groups in 2004 to achieve this goal. Strategies developed for neuroblastoma are an exemplar for other rare malignancies. Data from an initial cohort of 8,800 patients were transferred to the INRG Data Commons, and a data-sharing model was developed. Currently, information on > 25,000 patients are available to the research community. The INRG staging and risk classification systems have led to harmonized approaches for therapeutic groupings. INRG consensus manuscripts have led to uniform criteria for classifying biological data, evaluating the extent of disease, and defining treatment response. More than forty INRG research studies have been performed by investigators from around the world, including analyses of rare patients which would not otherwise be possible. The success of this approach for neuroblastoma has been leveraged to create the Pediatric Cancer Data Commons and the Data for the Common Good. Efforts to enrich the INRG Commons with additional genomic and biomarker data, extracted electronic health records, and digital medical images are ongoing. The international networking model developed by the INRG Task Force has led to new research discoveries and progress in neuroblastoma. The approach has now been applied to sixteen other cancers and conditions, including rhabdomyosarcoma, germ cell tumor, Lynch Syndrome and cancer predisposition. This framework of international collaboration and data sharing serves as a model for advancing rare adult malignancies.