International neuroblastoma risk group consortium: a model of networking for rare cancers.
WHY IT MATTERS
Patients with neuroblastoma now benefit from standardized treatment approaches and risk classifications developed through this international collaboration, which means more consistent and potentially better care regardless of where they receive treatment.
Doctors from around the world created a network called the International Neuroblastoma Risk Group to share information about neuroblastoma, a type of cancer that starts in nerve cells. They combined data from over 25,000 patients to help researchers understand the disease better and develop better treatment plans. This teamwork model shows how rare cancer research can be improved when hospitals and countries work together.
International neuroblastoma risk group consortium: a model of 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 4 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 8800 patients were transferred to the INRG Data Commons, and a data-sharing model was developed. Currently, information on more than 25 000 patients is 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 defin Authors: Cohn et al. Journal: Journal of the National Cancer Institute MeSH: Humans, Neuroblastoma, Rare Diseases, Information Dissemination