This spring, we celebrate the twentieth anniversary of the International Neuroblastoma Risk Group (INRG), whose international collaboration has made strides for neuroblastoma treatment, inspired similar groups for other diseases, and laid the foundation for the Pediatric Cancer Data Commons.

It has been twenty years since neuroblastoma researchers from major cooperative groups in North America, Europe, and Japan met in Whistler, British Columbia, Canada to establish a consensus approach for pre- treatment staging and risk stratification for neuroblastoma patients. This meeting resulted in the formation of the International Neuroblastoma Risk Group (INRG), producing an initial cohort of 8,800 patients, all harmonized to a single data standard.
Under the leadership of Dr. Sue Cohn and Dr. Andy Pearson, the INRG developed and published the INRG staging and risk classification systems that led to harmonized approaches for therapeutic groupings. Using this data, more than forty INRG analyses have been performed and published by investigators from around the world, including rare patient studies which would not otherwise be possible. Moreover, the initial staging work built a platform of international collaboration that led to additional consensus on diagnostic criteria and response criteria, and standards for molecular diagnostics. The achievements of the INRG over the last 20 years have demonstrated the great benefits of international collaboration and data sharing for children with neuroblastoma and serve as an exemplar for other rare malignancies and diseases.
Since the first INRG spreadsheet was given to Dr. Sam Volchenboum back in 2013, the INRG has been the inspiration to leaders in many other tumor types, and ultimately given rise to the Pediatric Cancer Data Commons—now the world’s largest set of harmonized clinical data from children with all types of cancer with over 45,000 unique patients and counting. Researchers continue to learn and benefit from your experiences and are grateful for your leadership and advocacy. Thank you Dr. Cohn. Thank you Dr. Pearson. Thank you INRG. We can’t wait to see what’s next.
—Dr. Julie Park, Dr. Gudrun Schleiermacher, and Dr. Sam Volchenboum