Patient data platform joins TriNetX to support research for rare conditions

By Vassia Barba contact

- Last updated on GMT

(Image: Getty/peshkov)
(Image: Getty/peshkov)

Related tags: Rare disease, Data, Patient recruitment, trial recruitment

Raremark’s patient data and demographics will be integrated in TriNetX’s platform to help people with rare conditions access clinical trials and facilitate recruitment.

The partnership will see Raremark, a real-world data platform focused on patients with rare conditions, join the global health network, TriNetX​, aiming to bring more clinical trials to its community.

Specifically, TriNetX will pull in and map Raremark’s data including demographics and diagnoses to make it available on its platform, with Raremark gaining access to the former’s Trial Connect feature.

Integration of Raremark’s data with TriNetX is expected to assist clinical research for rare conditions, helping patients access a broader range of opportunities to participate in clinical trials.

According to TriNetX, this answers a significant existing need, since about 350 million people are affected by more than 7,000 known rare medical conditions, of which only 200 have approved treatments.

Commenting on the partnership, Julie Walters, founder and executive director of Raremark, said that the volume of research opportunities that flow through the network offers a ‘dramatically expanded’ opportunity for rare disease patients to participate in trials that can lead to effective new therapies.

On his side, Steve Lethbridge, SVP of global data network at TriNetX said that the partnership will add valuable patient communities, complementing its existing network data, whilst helping pharmaceutical companies and contract research organizations (CROs) find the patients they need.

Based in Cambridge, MA, TriNetX has partnered with health care organizations across 25 countries and thousands of sites, and recently was named as a technology partner​ in two coordinating centers of the US Food and Drug Administration’s (FDA) Sentinel System.

Related news

Show more