Partnership supports rare disease research and breaking down data silos to accelerate treatments
Washington, D.C.— January 13, 2023 — RARE-X, the Global Genes patient-driven data collection platform, today announced a collaboration with Coordination of Rare Diseases at Sanford (CoRDS), enabling rare disease patients to better share their data and accelerate the development of diagnoses and treatments. In addition, patient advocacy groups already working with CoRDS will have the opportunity to expand and interconnect their data by leveraging RARE-X’s shared federated data platform.
With more than 10,000 rare diseases worldwide, rare disease groups struggle to compile rich, longitudinal patient data and clinical natural history data. This information is critical for patients and their doctors to understand their diseases better, entice researchers and biopharma to invest in their diseases, and help determine meaningful clinical endpoints. This collaboration will help break down data silos to make rich natural history data accessible to rare disease groups and researchers.
“CoRDS already helps link patients to researchers and clinical trials that are available for them,” said Dr. David Pearce, president of Sanford Research. “By collaborating with RARE-X, we can help ensure we can support expanded data collection and interoperability between existing CoRDS registries and RARE-X.”
RARE-X recognizes the many data gaps that exist in rare disease research and understands the importance of data sharing and data interoperability for researchers. RARE-X offers an automated and structured platform to support standardized data collection while enabling patient communities with proper governance, consent, and technology that can support a data ecosystem built for discovery.
“We are collaborating with CoRDS to expand the gathering of patient-reported outcomes from their health data,” said Charlene Son Rigby, CEO of Global Genes. “CoRDS shares the same commitment to patients as we do, and we are honored to collaborate with them to provide patients the ability to interconnect their data, making it easily accessible for researchers, to accelerate disease understanding and therapy development.”
RARE-X is a program of Global Genes focused on supporting the acceleration and development of life-altering treatments and future cures for patients impacted by a rare disease. Enabled by best-in-class technology, patients, researchers, and other technology vendors, RARE-X gathers structured, fit-for-purpose data to share broadly, benefitting from 21st-century governance, consent, and federated data-sharing technology. Through RARE-X, Global Genes is building the largest collaborative patient-driven, open-data access project for rare diseases globally. For more information, visit www.rare-x.org.
About Sanford Health
Sanford Health, the largest rural health system in the United States, is dedicated to transforming the health care experience and providing access to world-class health care in America’s heartland. Headquartered in Sioux Falls, South Dakota, the organization serves more than one million patients and 220,000 health plan members across 250,000 square miles. The integrated health system has 47 medical centers, 2,800 Sanford physicians and advanced practice providers, 170 clinical investigators and research scientists, more than 200 Good Samaritan Society senior care locations and world clinics in 8 countries around the globe. Learn more about Sanford Health’s commitment to shaping the future of rural health care across the lifespan at sanfordhealth.org or Sanford Health News.
About Global Genes
Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. In pursuit of that mission, Global Genes connects, empowers, and inspires the rare disease community to stand up, stand out, and become more effective on their own behalf — helping to spur innovation, meet essential needs, build capacity and knowledge, and drive progress within and across rare diseases. Global Genes serves more than 400 million people around the globe, and nearly one in 10 Americans affected by rare diseases. If you or someone you love has a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or visit the Resource Hub.
Marketing Communications – Global Genes/RARE-X