commonsgrid

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: Enal Hindi, ehindi@bsd.uchicago.edu
Procedures: FRIENDS Procedures Manual

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 FA DNA repair pathway. People living with FA have a very high risk of developing bone marrow failure and solid tumors, and often have many other systemic issues. Because FA is a rare disease with siloed data, it is especially important to combine and share data for research and discovery to ultimately advance rare cancer disease research.

The top research priorities for the FRIENDS are bone marrow failure and transplant, cancer, and genetics. Other research priorities for the FRIENDS include breakage analysis and diagnosis, community engagement, demographics, developmental abnormalities, dietary history, environmental exposures, family history, Fanconi Associated Neurological Syndrome (FANS), fertility, and psychosocial research.

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 other specialties. Global REACH is composed of a growing list of world-renowned cooperative groups and institutions, including: Children’s Oncology Group (COG), European Retinoblastoma Group (EURbG), Grupo de America Latina de Oncologia Pediatrica (GALOP), International Retinoblastoma Consortium (IRbC), Children’s Hospital Los Angeles (CHLA), Dana Farber Cancer Institute / Boston Children’s Hospital, the Hospital for Sick Children (Sick Kids), MD Anderson, St. Jude Children’s Research Hospital, and Texas Children’s Hospital. Global REACH also looks forward to welcoming patient advocates to the Executive Committee and related activities. 

Retinoblastoma is a rare disease in children, with 8,000 children newly affected each year worldwide (Fabian and Sagoo, 2018). Historically, there have been few cooperative groups collecting data for patients with retinoblastoma. The Global REACH data commons will include retrospective and prospective data derived globally from electronic health records, clinical trials, and registries. Global REACH will give unprecedented access to clinical and biological data to advance the care and improve outcomes of children with retinoblastoma.  

To date, Global REACH has identified over 700 retinoblastoma patients to be included in the Pediatric Cancer Data Commons. 

Focus: Childhood Cancer Predisposition
Consortium: Consortium for Childhood Cancer Predisposition (C3P)
Headquarters: Emory University
Website: childhoodcancerpredisposition.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 for pediatric cancer predisposition syndromes (CPS), including those with and without a cancer diagnosis, as a well as family members. Studying individuals at high risk for childhood cancer creates a unique opportunity for improving the understanding of carcinogenesis, tumor surveillance, early tumor detection, and cancer prevention, which will ultimately improve care and outcomes for those with CPS.

The Consortium for Childhood Cancer Predisposition was formally established in 2020 as a collaboration of researchers from seven institutions that will contribute to the data commons.

Cancer: Central Nervous System (CNS) Tumors
Consortium: International Central Nervous System Pediatric Research Consortium (INSPiRE)
Headquarters: University of Chicago
Consortium Manager: Maya Maric, mmaric@bsd.uchicago.edu

The INSPiRE consortium, established in September 2021, brings together all types of central nervous system tumors in a comprehensive data resource. Researchers involved in INSPiRE represent the following groups: the Children’s Oncology Group (COG), the Pacific Pediatric Neuro-Oncology Consortium (PNOC), the International DIPG/DMG Registry (IDIPGR), the European Society for Pediatric Oncology (SIOPE), the Rare Brain Tumor Consortium (RBTC) and the Children’s Brain Tumor Network (CBTN).

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 term toxicity, and study rare subtypes. NODAL will launch a radiation and imaging work group to identify the data available to aid in studies and a Young Adults work group to serve as liaison to the adult trials.

Cancer: Bone Tumors (Osteosarcoma and Ewing Sarcoma)
Consortium: Harmonization International Bone Sarcoma Consortium (HIBiSCus)
Headquarters: University of Chicago
Consortium Manager: Kat Bouzein, kblumhardt@bsd.uchicago.edu

The Harmonization International Bone Sarcoma Consortium (HIBiSCus) was formally established in 2021. The HIBiSCus group includes experts in both osteosarcoma and Ewing sarcoma, as well as data contributions from Children’s Oncology Group (COG), Cooperative Ewing Sarcoma Study Group (CESS), Cooperative Osteosarcoma Study Group (COSS), Euro Ewing Consortium (EEC), French Bone Sarcoma Group (GROUPOS), Grupo America Latina de Oncologia Pediatrica (GALOP), Italian Study Group (ISG), National Cancer Research Institute Sarcoma Clinical Studies Group (NCRI), Scandinavian Sarcoma Group (SSG), and Spanish Sarcoma Group (GEIS). To date, HIBiSCus has identified data from over 7,500 patients with Ewing sarcoma and over 5,000 patients with osteosarcoma to be included in the data commons.

Cancer: Germ Cell Tumors
Consortium: Malignant Germ Cell International Consortium (MaGIC)
Headquarters: Dana-Farber Cancer Institute
Website: magicconsortium.com
Consortium Manager: Lindsay Klosterkemper, lindsay_klosterkemper@dfci.harvard.edu

The Malignant Germ Cell International Consortium brings together the world’s leading experts in germ cell tumors,  from across the spectrum of cancer research, with the shared goal of developing more effective treatments for germ cell tumors through scientific inquiry. Collaboration across a wide range of disciplines – clinical trialists, basic scientists, bioinformaticists, pathologists, statisticians, surgeons, epidemiologists – is allowing MaGIC to accelerate the pace of discovery and the promise of change. In 2019, the Pediatric Cancer Data Commons began working with MaGIC in order to integrate germ cell tumor data into the PCDC.

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 discoveries have already been made using this unique resource.

The patient data included in this database comes from cooperative groups: Children’s Oncology Group (COG), Gesellschaft für Pädiatrische Onkologie und Hämatologie (GPOH), Neuroblastoma Committee of Japan Children’s Cancer Group (JCCG), Japanese Infantile Neuroblastoma Co-operative Study Group (JINCS), and Society of Paediatric Oncology Europe Neuroblastoma Group (SIOPEN). The amount of data continues to expand, as the 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. In addition, efforts to add data on patients with relapsed disease as well as new genomic data including ALK mutations and segmental chromosomal aberrations are ongoing. Radiographic and pathology imaging data will also be uploaded in the future. The architecture housing the database has been transformed to a new web-based system with technology that enables linkage with other databases. This new ecosystem, the INRG Data Commons, has enabled the connection of the phenotype data 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. Links to genomic data in GEO and TARGET have also been established. Thus, in addition to clinical information, investigators are now able to determine if banked tumor tissue or genomic data are available for research studies on specific cohorts of patients. We anticipate that the INRG Data Commons 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.

Cancer: Soft Tissue Sarcoma
Consortium: International Soft Tissue Sarcoma Consortium (INSTRuCT)
Headquarters: University of Chicago
Consortium Manager: Suzi Birz, sbirz@bsd.uchicago.edu

Researchers created this consortium with the goal of establishing a a soft tissue sarcoma data commons to share and provide access to digital objects, focusing on RMS and NRSTS clinical trials data from the United States and Europe. The INSTRuCT database integrates clinical data from the Children’s Oncology Group (COG), The European Paediatric Soft Tissue Sarcoma Study Group (EpSSG), Cooperative Weichteilsarkom Studiengruppe (CWS) der Gesellschaft für Pädiatrische Onkologie und Hämatologie (GPOH), International Society for Pediatric Oncology (SIOP) Malignant Mesenchymal Tumour (MMT), and the Italian Associazione Italiana di Ematologia e Oncologia Pediatrica (AIEOP) Soft Tissue Sarcoma Committee (STSC). You may self-register for an account to perform cohort discovery on the data in the INSTRuCT data commons.

The INSTRuCT Executive Committee has formed six discipline work groups to advance the consortium’s efforts. These efforts have resulted in the RMS and NRSTS data dictionaries and published consensus papers.  The work groups are Imaging, Pathology/Biology, Non-Rhabdomyosarcoma Soft Tissue Sarcoma (NRSTS), Radiation Oncology, Statistics/Informatics, and Surgeons.

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 has identified 18 studies from 10 clinical trials research groups that can be contributed to the data commons, and its statisticians are actively working to harmonize clinical data from more than 6,000 individuals who have had pediatric cancer.