Going it alone to create a patient cohort population that is large enough to study can be a time-consuming process for an individual genetic scientist who wants to make a difference in a pediatric disease. That’s why three premier pediatric academic medical institutions — Children’s Hospital of Philadelphia, Cincinnati Children’s Hospital Medical Center, and Boston Children’s Hospital — formed the new Genomics Research and Innovation Network (GRIN) to foster a culture of data sharing.
“The ultimate goal is to have this resource populated with over 100,000 cases that would include individuals’ clinical data at a high resolution, genotyping data, and associated biospecimens so that you can move discovery forward,” said Ian Krantz, MD, an attending physician in the division of Human Genetics at CHOP who serves on GRIN’s executive team.
The new initiative helps to overcome barriers to research in pediatric genomics by addressing the problem of too much data and too little time. A wealth of data is available through electronic health records, clinical trials, and data registries, but it is not feasible for individual researchers to comb through all this information and extract what they need to identify large patient cohorts with deep phenotyping. GRIN aims to make this process more consistent, precise, and seamless for its members by establishing a data trust that will allow for more comprehensive analysis of complex disease.
While GRIN is getting up and running, it currently is only open to investigators at the three member institutions, but the idea is to invite other institutions to join GRIN in the future. Before any investigator dives into this unparalleled resource, GRIN’s scientific committee will vet their research proposals. The network’s sustainability committee also is considering how to handle commercial interest, such as from pharmaceutical companies.
“This is a very valuable resource that could be leveraged for drug discovery and therapeutic trials,” Dr. Krantz said. “Having access to this type of well-characterized and accessible cohort with available biological samples is very appealing.”