NEW YORK (GenomeWeb News) – Sanofi US has awarded $300,000 to a group of patient advocacy organizations, including Genetic Alliance, to create a crowd-sourced disease registry that will enable patients to store and share their medical data and biological samples for use in research.
The Registries for All Diseases proposal was awarded the funding through the Sanofi US Collaborate Activate Innovation Challenge, a competition run by Sanofi's Partners in Patient Health designed to promote the sharing of complementary resources among diverse organizations.
"Registries for All Diseases exemplifies the collaborative nature of the challenge by creating a multi-tiered solution that captures both common data across all diseases and disease-specific data, showcasing the expertise of each partnering organization," Anne Whitaker, president of North America Pharmaceuticals at Sanofi US, said in a statement yesterday.
Along with Genetic Alliance, the Registries for All Diseases collaborators include the CFIDS (chronic fatigue and immune dysfunction syndrome) Association of America, National Psoriasis Foundation, and the Inflammatory Breast Cancer Research Foundation.
"In a nutshell, our team seeks to create a cross-disease, systems biology-based, crowd-sourced, long tail, aggregated resource critical to advancing translational research on more than 1,000 diseases," Genetic Alliance President and CEO Sharon Terry wrote in an explanation of the proposal in October.
Terry wrote that Genetic Alliance has already launched a prototype for this registry, the Genetic Alliance Registry and Biobank, which contains over 30,000 samples and clinical records on over 1,000 individuals.
"Data can accelerate research and services, help us get better patient outcomes, and save money," Terry said in a statement released by Sanofi yesterday. "But right now, this data is in silos and is not easily accessible to researchers. By creating a patient-centered research network that spans many diseases, people will be empowered to participate in their own health and can contribute data to advance the development of disease treatments."
The secure registry will engage participants through a survey that takes up their clinical information, a virtual research network that asks them a hundred clinical questions to characterize them for potential research, and a detailed questionnaire drafted by the disease advocates. It also will provide the opportunity to bank biological samples.