Focus: Fanconi anemia Consortium: Fanconi Research Initiative for Education, Networking, and Data Sharing (FRIENDS) Headquarters: Fanconi Cancer Foundation Website: fanconi.org/data-project Consortium Manager: Kat Bouzein, kblumhardt@bsd.uchicago.edu Fanconi Anemia (FA) is a rare genetic, cancer predisposition disease caused by mutations in any of the known 22 genes, including BRCA1 and BRCA2, that play a role in the...
Data for the Common Good applies our expertise in data sharing, as well as the streamlined and scalable infrastructure and processes that we have developed for the Pediatric Cancer Data Commons, to other areas where we can make a difference. Our portfolio of projects includes major government initiatives, tools for patients and clinicians, data commons...
Cancer: Retinoblastoma Alliance: Global Retinoblastoma Alliance for Children (Global REACH) Headquarters: University of Chicago Alliance Manager: Maya Maric, mmaric@bsd.uchicago.edu The Global REtinoblastoma Alliance for CHildren (Global REACH) was formally established in 2022 as a collaboration of experts in the fields of pediatric oncology, ocular oncology, ophthalmology, pathology, surgery, radiation oncology, genetics and genomics, biostatistics and...
Focus: Childhood Cancer Predisposition Consortium: Consortium for Childhood Cancer Predisposition (C3P) Headquarters: Emory University Consortium Manager: Chloë Edgerton, Chloe.Edgerton@choa.org The long-term goal of this consortium is to improve outcomes for children at high risk for cancer due to hereditary tumor predisposition. A major effort toward this goal is the establishment of a database and biorepository...
The External Advisory Board (EAB), composed of clinical, data science, and digital health experts not otherwise affiliated with the PCDC, works with the Scientific Advisory Committee (SAC) to share their unique experience and offer high-level strategic advice. Purpose: To offer insights on initiatives of the Pediatric Cancer Data Commons To review and recommend strategic direction...
The Scientific Advisory Committee (SAC), composed of international consortium representatives and domain experts, provides strategic and operational guidance for the Pediatric Cancer Data Commons. Purpose: To ensure that the PCDC has an appropriate, sustainable, and ethical approach to linking data across diseases and data types (clinical, genomics, imaging, tissues, histology, etc.) To build and refine...
A commons-based approach opens new doors to scientific discovery. The publications below represent the collective efforts of PCDC disease consortia. For a more detailed view into the planned, ongoing, and published research of PCDC consortia, see our PCDC research dashboard. In addition, Data for the Common Good has published numerous papers about our methods and...
Cancer: Hodgkin Lymphoma Consortium: Hodgkin Lymphoma Data Collaboration (NODAL) Headquarters: University of Chicago Consortium Manager: Suzi Birz, sbirz@bsd.uchicago.edu Researchers have created this consortium with the goal of establishing a database containing information from clinical trials to enable scientific investigations, including to harmonize staging and response assessment, improve prognostic factors, enable assessment of short and long...
Cancer: Neuroblastoma Consortium: International Neuroblastoma Risk Group (INRG) Headquarters: University of Chicago Website: inrgdb.org Consortium Manager: Suzi Birz, sbirz@bsd.uchicago.edu The INRG task force has established a database containing information on over 22,000 children with neuroblastoma from around the world. These data are available to investigators from around the world for data mining studies, and significant...
Cancer: Acute Myeloid Leukemia Consortium: International Acute Myeloid Leukemia Consortium (INTERACT) Headquarters: University of Chicago Consortium Manager: Enal Hindi, ehindi@bsd.uchicago.edu INTERACT was formally launched in 2021 as a collaboration between acute myeloid leukemia researchers from Children’s Oncology Group, European Pediatric Acute Leukemia, Japan Children's Cancer Group, and St. Jude Children’s Research Hospital. To date, INTERACT...