Pharmaceutical packaging firms, patients, medical staff and others could benefit from the registry, designed to foster collaboration in medical research.
Sanofi US announced today that Registries for All Diseases has been selected as the winner of the Collaborate Activate Innovation Challenge.
Registries for All Diseases will receive an award of $300,000 to create a comprehensive, crowdsourced, cross-disease registry to help accelerate translational research for over 1,000 diseases. The team consists of partnering organizations Genetic Alliance, CFIDS Association of America, National Psoriasis Foundation, and the Inflammatory Breast Cancer Research Foundation.
"Data can accelerate research and services, help us get better patient outcomes, and save money," said Sharon Terry, President and CEO of Genetic Alliance, "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 registry infrastructure will include robust privacy controls, allowing individuals to allow or decline access to data requests.
Registry for All Diseases was one of four teams selected to partake in the final phase of Collaborate Activate. Each of the finalists received a $25,000 award and mentorship from Sanofi team members and healthcare experts, drawing on the mentors' insight to refine their solutions before presenting to the judges. This phase afforded the finalists the unique opportunity to access Sanofi's expertise in preparation for a Finalist Event at the Newseum in Washington, DC, during which each team presented its solution to an independent, expert panel of judges. Sanofi received submissions from over 280 partnering organizations for solutions to help patients engage in their health across a broad range of therapeutic areas.
"Collaborate Activate embodies our commitment to improving health outcomes for patients by uniting the advocacy community to accelerate innovation," said Anne Whitaker, President, North America Pharmaceuticals at Sanofi US. "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."
Collaborate Activate is an initiative of Sanofi's Partners in Patient Health, which first announced the challenge in May 2012 at an event in Washington, DC. The challenge required two or more groups to collaborate in order to qualify for the contest and designed to promote sharing of complementary resources among partnering organizations.
"Creating a registry of patients is the single most valuable action a rare disease community can take," said David Meeker, MD, President and CEO of Genzyme, a Sanofi company. "The registry provides critical disease knowledge which makes that disease easier to study, increasing the probability a treatment can be developed. We congratulate the Registries for All Diseases team."
Sanofi US established the challenge with the belief that bringing together patient advocates creates a multiplier effect, and leads to innovative ideas that would not otherwise be possible. Registries for All Diseases proves how powerful this multiplier effect can be: together, the team intends to reach over 9,000 health organizations and 1,200 disease advocacy organizations. Utilizing data from such a broad network has the potential to have a tremendous impact on patient outcomes.
The runner-up in the Collaborate Activate Innovation Challenge is 21st Century Brain Trust, a self-administered, clinical-grade cognitive testing app to detect asymptomatic Alzheimer's disease. In addition to anticipating the onset of Alzheimer's, one of the team's larger goals is to support a dialogue based on brain health rather than brain disease, empowering people to take control of their cognitive well-being. The team, comprised of the Geoffrey Beene Gives Back Alzheimer's Initiative, the American Health Assistance Foundation, and the USAgainstAlzheimers Network, will receive $100,000 to further develop its solution.