PatientsLikeMe and Actelion are partnering in a research initiative to create a new patient-reported outcomes tool for the rare form of non-Hodgkin's lymphoma called MF-CTCL. The collaboration will leverage PatientsLikeMe’s Open Research Exchange (ORE), an online hub for developing and sharing new health measures that better reflect patients’ experiences living with and managing disease.

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. Mitchell Nagao, Actelion’s senior director and medical head, said he believes this open approach to research will enhance the existing evidence about MF-CTCL.

Nagao 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.”

Paul Wicks, PatientsLikeMe vice president of innovation, said the project further reinforces that ORE is a proven platform for developing new patient-based measures. “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.”

Actelion will work with PatientsLikeMe to engage people who have MF-CTCL for support and research and to develop and test the tool.

Cutaneous (skin) T-cell lymphomas (CTCL) are non-Hodgkin's lymphomas that primarily involve the skin but also can involve the lymph nodes, blood and other organs. Mycosis fungoides (MF-CTCL) is the most common type of CTCL.