An area of CHIP pioneering innovation is federated networks, a practice which enables decentralized approaches to data distributed across sites. From our faculty’s earliest forays into the field with the Shared Pathology Information Network (The NCI funded “Napster for pathology samples”) to the first demonstration of federated research networks for biosurveillance, to development of the Shared Health Research Innovation Network (SHRINE) network.

Our program has worked with sister academic medical institutions to establish globally scalable technology, policies and procedures for sharing genomic, phenotypic and biospecimen data on broadly consented cohorts, across sites of care. We have, in partnership with our sister sites, developed two federated data sharing commons, the Genomic Research and Innovation Network (GRIN) and the Genomic Information Commons (GIC). Our faculty have developed the first query portal in the world that provides a uniform interface that enables users to retrieve genomic data, phenotypic data and biospecimen metadata in a single query. The technology, policies, and procedures that we have developed enable us to acquire additional partners and scale our federated data sharing globally.

Projects

Publications

Hopper RK, Abman SH, Elia EG, Avitabile CM, Yung D, Mullen MP, Austin ED, Bates A, Handler SS, Feinstein JA, Ivy DD, Kinsella JP, Mandl KD, Raj JU, Sleeper LA, . Pulmonary Hypertension in Children with Down Syndrome: Results from the Pediatric Pulmonary Hypertension Network Registry. The Journal of pediatrics 2022.

Wang X, Zhang HG, Xiong X, Hong C, Weber GM, Brat GA, Bonzel CL, Luo Y, Duan R, Palmer NP, Hutch MR, Gutiérrez-Sacristán A, Bellazzi R, Chiovato L, Cho K, Dagliati A, Estiri H, García-Barrio N, Griffier R, Hanauer DA, Ho YL, Holmes JH, Keller MS, Klann MEng JG, L'Yi S, Lozano-Zahonero S, Maidlow SE, Makoudjou A, Malovini A, Moal B, Moore JH, Morris M, Mowery DL, Murphy SN, Neuraz A, Yuan Ngiam K, Omenn GS, Patel LP, Pedrera-Jiménez M, Prunotto A, Jebathilagam Samayamuthu M, Sanz Vidorreta FJ, Schriver ER, Schubert P, Serrano-Balazote P, South AM, Tan ALM, Tan BWL, Tibollo V, Tippmann P, Visweswaran S, Xia Z, Yuan W, Zöller D, Kohane IS, Avillach P, Guo Z, Cai T, . SurvMaximin: Robust federated approach to transporting survival risk prediction models. Journal of biomedical informatics 2022.

Torous J, Stern AD, Bourgeois FT. Regulatory considerations to keep pace with innovation in digital health products. NPJ digital medicine 2022.

Levy S, Wisk LE, Minegishi M, Ertman B, Lunstead J, Brogna M, Weitzman ER. Association of Screening and Brief Intervention With Substance Use in Massachusetts Middle and High Schools. JAMA network open 2022.

Nielsen M, Presti M, Sztupinszki Z, Jensen AWP, Draghi A, Chamberlain CA, Schina A, Yde CW, Wojcik J, Szallasi Z, Crowther MD, Svane IM, Donia M. Co-existing alterations of MHC class I antigen presentation and IFNγ signaling mediate acquired resistance of melanoma to post-PD-1 immunotherapy. Cancer immunology research 2022.