TriNetX announced Raremark, a patient data platform focused on rare disease, has partnered with the TriNetX network to bring more clinical trials to the 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, 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."
The TriNetX team will pull in and map Raremark demographics, diagnoses 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.
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 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 area 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."