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

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.

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Publication Details

Journal
JNCI Journal of the National Cancer Institute
Published
2025-08-25
DOI
https://doi.org/10.1093/jnci/djaf242
Citations
2
Primary Topic
Neuroblastoma Research and Treatments
Type
article
Field-Weighted Citation Impact
2.78

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article

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

Arlene Naranjo, Wendy B. London, Garrett M. Brodeur, Dominique Valteau‐Couanet et al.
2 citations
JNCI Journal of the National Cancer Institute
Neuroblastoma Research and Treatments
2.78
article

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

Arlene Naranjo, Wendy B. London, Garrett M. Brodeur, Dominique Valteau‐Couanet, Julie R. Park, Katherine K. Matthay, Ulrike Pötschger, Samuel L. Volchenboum, Michael T. Watkins, Susan L. Cohn, Rochelle Bagatell, Susan A. Burchill, Hervé J. Brisse, Meredith S. Irwin, Penelope Brock, Frank Berthold, Sara Michele Federico, Brian Furner, Andrew D.J. Pearson, Angelika Eggert, Akira Nakagawara, Matthias Fischer, Takehiko Kamijo, Barbara Hero, Gudrun Schleiermacher, Peter F. Ambros, Klaus Beiske, Suzi Birz, David Machin, Lucas Moreno, Inge M. Ambros, Maja Beck Popovicmd
article en
2 citations

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.

JNCI Journal of the National Cancer Institute
TH Köln - University of Applied Sciences (DE), Children's Oncology Group (CH), Hebron University (PS), Oslo University Hospital (NO), St. Jude Children's Research Hospital (US), Children's Hospital of Philadelphia (US), University of Leicester (GB), Inserm (FR), German Cancer Research Center (DE), University of Cologne (DE), University of Oslo (NO), Heidelberg University (DE), Université Paris Sciences et Lettres (FR), Great Ormond Street Hospital for Children NHS Foundation Trust (GB), Hospital for Sick Children (CA), St James's University Hospital (GB), Institut Gustave Roussy (FR), Centre Hospitalier Universitaire Vaudois (CH), University of Illinois Chicago (US), University of Chicago (US), German Cancer Society (DE), SAGA Heavy Ion Medical Accelerator in Tosu (JP), Cancer Research Institute of the Slovak Academy of Sciences (SK), Royal Marsden Hospital (GB), Saitama Cancer Center (JP), St Anna Children's Hospital (AT), Vall d'Hebron Hospital Universitari (ES), UCSF Benioff Children's Hospital (US), Comer Children's Hospital (US), University Hospital Cologne (DE), Dana-Farber/Boston Children's Cancer and Blood Disorders Center (US), Community College of Rhode Island (US), Goodwin College (US), Charité - Universitätsmedizin Berlin (DE), University of Pennsylvania (US), Institut Curie (FR), University of Lausanne (CH)
Children's Cancer Research Fund, Alex's Lemonade Stand Foundation for Childhood Cancer, Rally Foundation
Openalex Percentile: Top 9%
Neuroblastoma Research and Treatments
2.78
DOIOpen Access PDFOpenAlex
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