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TriNetX, the global health research network that enables discoveries through the generation of real-world evidence (RWE), has announced that Raremark, a patient-data platform focused on rare disease, has partnered with the TriNetX network to bring more clinical trials to its community.
There are currently about 350 million people affected by more than 7,000 known rare medical conditions, of which only 200 have approved treatments. Raremark builds communities of people affected by a rare condition, sharing knowledge, and collecting real-world experience.
“We offer patients living with a rare condition the ability to find out about clinical trials and recently approved treatments, and to learn from the experience of other people like them,” said Julie Walters, Founder and Executive Director of Raremark. “The volume of research opportunities that flow through TriNetX from pharma and biotech offers a dramatically expanded opportunity for rare disease patients to participate in trials that can lead to effective new therapies.”
The TriNetX team will pull in and map Raremark demographics, diagnosis and other data to make it available on the TriNetX platform. As a member of the network, a pharma company can send Raremark trial opportunities directly using TriNetX’s Trial Connect functionality.
“This exciting new partnership with Raremark adds valuable patient communities to the network and makes patients and their families aware of clinical trial opportunities,” said Steve Lethbridge, Senior Vice President, Global Data Network at TriNetX. “Being therapeutic-agnostic makes our platform particularly effective for finding patients for rare disease studies. This partnership complements our existing network data and will help pharma and CROs find the patients they need for rare disease clinical trials.”
TriNetX has partnered with healthcare organizations (HCO) spanning 25 countries and thousands of sites, and with data providers covering 99 percent of US health plans to deploy a linked and continually updated global health research network representing over 400 million patients. TriNetX has been used to analyze over 23,000 protocols and has presented over 6,400 clinical trial opportunities to its HCO members.