RARE Daily

Raremark Partners with TriNetX to Connect Rare Disease Patients to Clinical Trials

February 25, 2020

Rare Daily Staff

Rare disease patient-data platform Raremark said it has partnered with the global health research network TriNetX to bring more clinical trials to the rare disease community.

Raremark builds communities of people affected by a rare condition, sharing knowledge, harnessing the wisdom of the crowd, and collecting real-world experience data unavailable elsewhere.

“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.”

Under the partnership, TriNetX will pull in and map Raremark demographics, diagnosis, and other data to make it available on the TriNetX platform. Pharmaceutical companies that are members of the network can send Raremark trial opportunities directly using TriNetX’s Trial Connect functionality.

TriNetX has already proven effective in connecting rare disease patients with applicable clinical trials. In one recent example, a biotech company was struggling to find patients with a rare disease and turned to TriNetX to help it identify additional trial candidates. A query of the TriNetX network rapidly identified 190 potential candidates at 21 sites and enabled the company to quickly engage nine of the patients to consider participating in the study.

“This partnership complements our existing network data and will help pharma and CROs find the patients they need for rare disease clinical trials,” said Steve Lethbridge, senior vice president, Global Data Network at TriNetX.

Photo: Julie Walters, founder and executive director of Raremark


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