Two Rare Disease Research Networks Combine to Connect Patients to Research Opportunities

As originally reported in Biospace, two research networks dedicated to forming bridges between rare disease research around the world will share their niches to promote discovery for rare diseases. TriNetX links research findings from across the world, giving real time access to research findings, and allowing for new ways to carry out research. Raremark is a also a network builder, with patient stories and information on ongoing trials and research for patients to participate in.
The two companies plan to utilize each others’ information with TriNetX analyzing the Raremark data and adding it to their library accessible to the larger network. The Raremark network will learn about opportunities to participate in research trials and clinical developments for rare disease, adding it to their platform. It’s important for rare disease patients and researchers to have avenues to find each other, because they can be very far away and there may not be many patients to sample. By creating even more inclusive platforms and connecting the existing ones, the likelihood of connecting tiny patient pools increases.

TriNetX

TriNetX  is a research network that provides patients, pharma companies, and researchers with real time access to new research.  By providing depth of information on their platform, they enable the various members of the rare disease community to expand on and connect information. The company analyzes the clinical protocols and is used as a middle man in publications and other findings.

Raremark

Raremark is alternatively network of patient research. It builds a bridge between patients and pharmaceutical companies, conglomerating and anonymizing crowd sourced patient feedback. Raremark also shares experiences between patients in order to build communities for the diseases and provides pharmaceutical companies with the knowledge formed by this database, in order to speed up their projects.
Raremark executives hope that partnering with TriNetX will open patients to a wider pool of trials that they can take part in. The Raremark platform already acts as an intermediary to let patients know about opportunities to participate in research, and TriNetX will bring many more options to the platform. One obstacle preventing rare disease therapies from being developed is the lack of research, which is due to many factors. An example is the small patient pool for researchers to gather reliable information from, as well as the inability for researchers to connect with patients. For example if there are only 10 patients with a disease, conducting a trial and finding the patients is nearly impossible. These platforms are critical for these sparse and scattered communities that greatly benefit from communication.

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