PatientsLikeMe and Actelion have hooked up under a new research initiative to create a new patient-reported outcomes tool for the rare form of non-Hodgkin's lymphoma called MF-CTCL. 

The alliance intends to leverage the patient network’s Open Research Exchange (ORE) - an online hub for developing and sharing new health measures that better reflect patients’ experiences in living with and managing disease, which researchers can use in the design of clinical trials, for example.

Actelion is the first pharmaceutical company to use ORE to create a measure for a rare condition and, once completed, to share it with other researchers, the firms said.

This “open approach” to research will improve the existing evidence about MF-CTCL, says Actelion’s Senior Director Mitchell Nagao. 

“As changes in technology, culture, and treatment affect how patients live with disease, we want measurement to evolve accordingly,” he explained, adding that the company’s work with PatientsLikeMe “will help ensure we’re applying the best principles for patient-centered research and giving tools back to the community so they can evolve them even more”.

With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies.