Actelion has formed a research partnership with an online patient community to create a new research tool for a rare form of non-Hodgkin's lymphoma.

The Swiss pharma company and PatientsLikeMe will work with patients to develop new health measures that better reflect patients' experiences living with and managing MF-CTCL., a disfiguring cancer, primarily of the skin.

The most prevalent form of cutaneous T-cell lymphomas (CTCL), mycosis fungoides CTCL accounts for about two per cent of all lymphomas.

Mitchell Nagao, Actelion's senior director - medical head of Valchlor and Zavesca, said: “As changes in technology, culture, and treatment affect how patients live with disease, we want measurement to evolve accordingly.

“Our 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.”

Actelion joins the likes of Sanofi, Merck & Co and Boehringer Ingelheim in working with PatientsLikeMe, but will be the first pharma company to use its online Open Research Exchange (ORE) hub.

PatientsLikeMe vice president of innovation Paul Wicks: “We created ORE to help patients and researchers work together to transform care and discovery that truly serve the patient. Now we're past the initial pilot stage, and it's exciting to see members of industry engaging with patients to develop more tools that really measure what matters to patients.”

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