Purpose: Clinicians and researchers must contextualize a patient's genetic variants against population-based references with detailed phenotyping. We sought to establish globally scalable technology, policy, and procedures for sharing biosamples and associated genomic and phenotypic data on broadly consented cohorts, across sites of care.
Methods: Three of the nation's leading children's hospitals launched the Genomic Research and Innovation Network (GRIN), with federated information technology infrastructure, harmonized biobanking protocols, and material transfer agreements. Pilot studies in epilepsy and short stature were completed to design and test the collaboration model.
Results: Harmonized, broadly consented institutional review board (IRB) protocols were approved and used for biobank enrollment, creating ever-expanding, compatible biobanks. An open source federated query infrastructure was established over genotype-phenotype databases at the three hospitals. Investigators securely access the GRIN platform for prep to research queries, receiving aggregate counts of patients with particular phenotypes or genotypes in each biobank. With proper approvals, de-identified data is exported to a shared analytic workspace. Investigators at all sites enthusiastically collaborated on the pilot studies, resulting in multiple publications. Investigators have also begun to successfully utilize the infrastructure for grant applications.
Conclusions: The GRIN collaboration establishes the technology, policy, and procedures for a scalable genomic research network.
Keywords: biobanking; electronic health records; federated networks; genomic medicine; information technology.
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A system to build distributed multivariate models and manage disparate data sharing policies: implementation in the scalable national network for effectiveness research.J Am Med Inform Assoc. 2015 Nov;22(6):1187-95. doi: 10.1093/jamia/ocv017. Epub 2015 Jul 3. J Am Med Inform Assoc. 2015. PMID: 26142423 Free PMC article.
The Biobank Portal for Partners Personalized Medicine: A Query Tool for Working with Consented Biobank Samples, Genotypes, and Phenotypes Using i2b2.J Pers Med. 2016 Feb 26;6(1):11. doi: 10.3390/jpm6010011. J Pers Med. 2016. PMID: 26927184 Free PMC article.
Balancing the local and the universal in maintaining ethical access to a genomics biobank.BMC Med Ethics. 2017 Dec 28;18(1):80. doi: 10.1186/s12910-017-0240-7. BMC Med Ethics. 2017. PMID: 29282045 Free PMC article. Review.
Development and progress of Ireland's biobank network: Ethical, legal, and social implications (ELSI), standardized documentation, sample and data release, and international perspective.Biopreserv Biobank. 2013 Feb;11(1):3-11. doi: 10.1089/bio.2012.0028. Biopreserv Biobank. 2013. PMID: 24845249 Free PMC article. Review.
- Genomics Research and Innovation Network (GRIN). GRIN portal. 2019. https://www.grinnetwork.org/. Accessed 2 September 2019.
- U01 TR002623/TR/NCATS NIH HHS/United States
- PrecisionLink/Boston Children's Hospital
- U01TR002623/TR/NCATS NIH HHS/United States
- R01GM104303/GM/NIGMS NIH HHS/United States
- U54 HD090255/HD/NICHD NIH HHS/United States
- R01 GM104303/GM/NIGMS NIH HHS/United States
- Genomics Research and Innovation Network/Children's Hospital of Philadelphia
- Genomics Research and Innovation Network/Cincinnati Children's Hospital Medical Center
- R01 HD075802/HD/NICHD NIH HHS/United States
- R01 MH107205/MH/NIMH NIH HHS/United States
- R01HD075802/Eunice Kennedy Shriver National Institute of Child Health and Human Development
- U54HD090255/Eunice Kennedy Shriver National Institute of Child Health and Human Development (US)
- R24 OD024622/OD/NIH HHS/United States