We’re thrilled to announce Registries for All Diseases (Reg4All) as the winner of the Partners in Patient Health Collaborate | Activate Innovation Challenge. Reg4All provides a cross-disease registry that uses crowdsourced, patient-generated information to accelerate the development of clinical trials. During a celebratory event today at Sanofi, the team will be awarded $300,000 to further develop its solution, aimed at both engaging people in their health and providing a robust resource for researchers to efficiently access the data they need.
Reg4All consists of partnering organizations Genetic Alliance, CFIDS Association of America, National Psoriasis Foundation, and the Inflammatory Breast Cancer Research Foundation. The advocacy organizations involved all made unique contributions to the team, sharing their knowledge of common and rare diseases. “Together we began to search for some way to bring parts of what we have achieved to all disease organizations,” said team member, Sharon Terry, President and CEO of Genetic Alliance, about the collaboration. Reg4All is built on the Genetic Alliance Registry and BioBank (GARB), a resource developed by Genetic Alliance and other organizations.
Registries for All Diseases aims to change the status quo by developing a comprehensive registry that spans over 1,000 diseases, gathering information from patients in a standardized way that is easily accessed and used by scientists and researchers alike. During the team’s presentation at the Innovation Challenge Finalist Event in Washington, DC, Terry outlined the difficulties faced in conducting disease research: a 5% participation rate in clinical trials among Americans, an unsustainable amount of resources spent on maintaining registries for specific diseases, and a fragmentation of data. As Terry noted, “We have more information than we know what to do with, but health care [and] biomedical research lag.”
By crowdsourcing clinical data, Reg4All encourages individuals to become engaged in their own health through contributing information that can lead to solutions that impact their lives in positive ways. Terry described in an earlier post here on the blog how the registry “empowers individuals to reclaim their health in the form of contributing data and samples.” Combining the large-scale impact of open source and open access with the network of disease advocacy organizations, this coordinated effort will enable researchers to draw connections between multiple diseases, rather than focusing on just one. Collaborate | Activate Judge Donna Cryer, President and CEO of the American Liver Foundation, described the project as bold and ambitious. “If anyone could get this done it would be Sharon Terry and these collaborators,” she added.
Registries for All Diseases has proposed a model that incorporates a three-tiered effort for data collection:
- Gamified Survey: An easy way for patients to begin entering information and see immediate responses.
- Common Data Elements: Collects data that the NIH has outlined to be important in disease research. It will measure the same element in the same way across all diseases.
- Disease Specific Data Elements: Collects detailed disease information, determined by expert organizations who understand the questions that need to be asked.
Kathleen Coolidge, Associate Director of Patient Advocacy for Rare Diseases, mentored the team during the final phase of the Challenge. “Learning about this new, creative initiative reinforced my belief in the value of partnering with patient groups. Their ability to think creatively, collaborate successfully, and innovate for such a creative idea is inspiring to us all,” Coolidge noted.
Following an impressive lineup of presentations at the Finalist Event, selecting a winner was a difficult decision for the judges. The Collaborate | Activate Runner-Up is 21st Century Brain Trust, who will be awarded $100,000 to continue work on its clinical-grade cognitive health monitoring app to detect asymptomatic Alzheimer’s disease. The team is comprised of the Geoffrey Beene Gives Back Alzheimer’s Initiative, the American Health Assistance Foundation, and the USAgainstAlzheimers Network. The two other finalist teams were Flu Near You, a patient-centered flu surveillance tool, and Partnering to End Pain, a web-based technology to connect chronic pain patients to clinical trials.
We’re incredibly appreciative of the more than 280 partnering organizations that submitted concepts to the Innovation Challenge, and to the judges, mentors, patient advocacy community, and everyone else who played a role in the success of Collaborate | Activate. Though the Challenge has come to a close, we envision the collaboration that took place here to create a ripple effect, inspiring patient advocates to continue working together by sharing ideas and knowledge. We hope that Collaborate | Activate has helped catalyze a shift towards increased openness, networking, and innovation within the greater healthcare ecosystem, driving patient-centered solutions that matter.