Rare Disease Patient Platform Raremark Partners With TriNetX
Cambridge, MA, February 24, 2020 — TriNetX, the global health research network that revolutionizes clinical research and enables discoveries through the generation of real-world evidence (RWE), today 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, 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, 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.
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-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% 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.
Raremark builds research networks of rare disease patients and their families, providing biopharmaceutical companies with access to anonymized and aggregated patient data unavailable elsewhere, supporting clinical development and accelerating speed to market. Raremark’s vision is a future in which all rare diseases are treated.
The Raremark platform engages and retains patients using machine learning and behavioral science. This novel approach raises health literacy and informed participation in medical research. The collective contributions of members of Raremark’s patient community helps the company build a valuable knowledge base of patient experience that becomes increasingly powerful over time. Raremark is headquartered in London, UK with offices in Boston, New York and Ukraine. Visit: www.raremark.com
TriNetX is the global health research network that revolutionizes clinical research and enables discoveries through the creation of real-world evidence. TriNetX combines real time access to longitudinal clinical data with state-of-the-art analytics to answer complex research questions at the speed of thought. The TriNetX platform is HIPAA and GDPR compliant. For more information, visit TriNetX at www.trinetx.com or follow @TriNetX on Twitter.
Sign up for updates
If you’re an industry professional and would like to subscribe to updates from our research team, including our research projects and our Rare Opinion blog, fill in your details below and we’ll add you to our mailing list.
Get in touch
Interested in working with us? we’d love to hear from you. Please use the form below to provide us with a few details and we’ll get back in touch with you.