International Neuroblastoma Risk Group

Headquarters: University of Chicago

The INRG task force has established a database containing information on over 20,000 children with neuroblastoma from around the world. These data are available to investigators from around the world for data mining studies, and significant discoveries have already been made using this unique resource.

The patient data included in this database continues to expand. Cooperative groups have agreed to update existing patient data and add new patient data once clinical trials are completed and the objectives of the trial are published. The architecture housing the database has been transformed to a new web-based system with technology that enables linkage with other databases. This new Interactive International Neuroblastoma Risk Group database (iINRGdb) has been successfully linked to the Children’s Oncology Group (COG) Biopathology Center at The Research Institute at Nationwide Children’s Hospital that contains banked neuroblastoma tumor tissue from COG patients. The iINRGdb also contains data from the COG neuroblastoma nucleic acid bank. Thus, in addition to clinical information, investigators are now able to determine if banked tumor tissue or nucleic acids are available research studies on specific cohorts of patients. We anticipate that the iINRGdb will facilitate international, multi-institutional, interdisciplinary research in childhood neuroblastoma, advance our understanding of the pathogenesis of this neoplasm, and ultimately lead to the development of more effective treatment strategies for children with neuroblastoma.

About Neuroblastoma

Neuroblastoma accounts for just over 7% of malignancies in patients less than 15 years of age and approximately 15% of all pediatric oncology deaths. It is the most common extracranial solid tumor in childhood and the most frequently diagnosed neoplasm during infancy. The tumor originates in cells of the sympaticoadrenal lineage of the neural crest, and can arise anywhere in the sympathetic nervous system.

Presenting signs and symptoms are highly variable and dependent on site of primary tumor as well as the presence or absence of metastatic disease and/or paraneoplastic syndromes. The disease is remarkable for its broad spectrum of clinical behavior and biologic heterogeneity. Substantial improvement in outcome has been observed in subsets of patients with low- and intermediate-risk disease. In addition, recent studies have demonstrated improvement in outcome for children with a “high-risk” clinical phenotype with intensive-multi-modality treatment that includes consolidation with stem cell transplant followed by immunotherapy and retinoic acid. However, cure rates for high-risk patients remain at less than 50% emphasizing the need for need for better classifiers and treatments.

Consortium Members

NCI DI-Cubed Data Integration Project

In partnership with Leidos Biomedical and the National Cancer Institute, in 2019 we developed a process for integrating radiology images into a data commons. Our contribution to the NCI DI-cubed Project tested the feasibility of linking image data to clinical data in a commons environment and serving this information to researchers in real time, with the INRG Data Commons serving as the paradigm system. In addition to incorporating some radiology images into the INRG Data Commons, this pilot project enabled us to make valuable recommendations to the NCI for expanding this type of work in the future.

INRG Data Commons Demonstration

The INRG Data Commons: A User Journey

Presented by Sam Volchenboum, MD, PhD
Advances in Neuroblastoma Research Meeting 2016