January 13, 2023
Contact:
Jon Berg
Sanford Well being Media Relations
605-366-2432 / jon.berg@sanfordhealth.org
Tom Hume
World Genes/RARE-X Advertising Communications
tom.hume@globalgenes.org
Washington, D.C — RARE-X, the World Genes patient-driven knowledge assortment platform, in the present day introduced a collaboration with Coordination of Uncommon Ailments at Sanford (CoRDS), enabling uncommon illness sufferers to raised share their knowledge and speed up the event of diagnoses and coverings. As well as, affected person advocacy teams already working with CoRDS can have the chance to increase and interconnect their knowledge by leveraging RARE-X’s shared federated knowledge platform.
With greater than 10,000 uncommon illnesses worldwide, uncommon illness teams wrestle to compile wealthy, longitudinal affected person knowledge and scientific pure historical past knowledge. This info is crucial for sufferers and their medical doctors to know their illnesses higher, entice researchers and biopharma to spend money on their illnesses, and assist decide significant scientific endpoints. This collaboration will assist break down knowledge silos to make wealthy pure historical past knowledge accessible to uncommon illness teams and researchers.
“CoRDS already helps hyperlink sufferers to researchers and scientific trials which might be obtainable for them,” stated Dr. David Pearce, president of Sanford Analysis. “By collaborating with RARE-X, we will help guarantee we will help expanded knowledge assortment and interoperability between present CoRDS registries and RARE-X.”
RARE-X acknowledges the various knowledge gaps that exist in uncommon illness analysis and understands the significance of information sharing and knowledge interoperability for researchers. RARE-X presents an automatic and structured platform to help standardized knowledge assortment whereas enabling affected person communities with correct governance, consent, and expertise that may help an information ecosystem constructed for discovery.
“We’re collaborating with CoRDS to increase the gathering of patient-reported outcomes from their well being knowledge,” stated Charlene Son Rigby, CEO of World Genes. “CoRDS shares the identical dedication to sufferers as we do, and we’re honored to collaborate with them to offer sufferers the flexibility to interconnect their knowledge, making it simply accessible for researchers, to speed up illness understanding and remedy improvement.”
About RARE-X
RARE-X is a program of World Genes centered on supporting the acceleration and improvement of life-altering remedies and future cures for sufferers impacted by a uncommon illness. Enabled by best-in-class expertise, sufferers, researchers, and different expertise distributors, RARE-X gathers structured, fit-for-purpose knowledge to share broadly, benefitting from Twenty first-century governance, consent, and federated data-sharing expertise. Via RARE-X, World Genes is constructing the most important collaborative patient-driven, open-data entry challenge for uncommon illnesses globally. For extra info, go to rare-x.org.
About Sanford Well being
Sanford Well being, the most important rural well being system in america, is devoted to reworking the well being care expertise and offering entry to world-class well being care in America’s heartland. Headquartered in Sioux Falls, South Dakota, the group serves multiple million sufferers and 220,000 well being plan members throughout 250,000 sq. miles. The built-in well being system has 47 medical facilities, 2,800 Sanford physicians and superior follow suppliers, 170 scientific investigators and analysis scientists, greater than 200 Good Samaritan Society senior care places and world clinics in 8 international locations across the globe. Be taught extra about Sanford Well being’s dedication to shaping the way forward for rural well being care throughout the lifespan at sanfordhealth.org or Sanford Well being Information.
About World Genes
World Genes is a 501(c)(3) non-profit group devoted to eliminating the burdens and challenges of uncommon illnesses for sufferers and households globally. In pursuit of that mission, World Genes connects, empowers, and conjures up the uncommon illness neighborhood to face up, stand out, and grow to be more practical on their very own behalf — serving to to spur innovation, meet important wants, construct capability and data, and drive progress inside and throughout uncommon illnesses. World Genes serves greater than 400 million individuals across the globe, and practically one in 10 Individuals affected by uncommon illnesses. When you or somebody you’re keen on has a uncommon illness or are trying to find a analysis, contact World Genes at 949-248-RARE (949-248-7273) or go to the Useful resource Hub.
###