Actelion working with PatientsLikeMe rare cancer community on outcome measure

PatientsLikeMe is continuing to expand its business into new areas. Having struck its first broad R&D collaboration with a biopharma earlier this year, the online patient network has now given Actelion ($ATLN) access to its community to create a new health outcome measure for a rare cancer.

The Actelion deal marks the first time PatientsLikeMe has opened up its platform for developing health outcome measures--what it calls the Open Research Exchange (ORE)--to a biopharma for the creation and sharing of a rare disease tool. Actelion will work with PatientsLikeMe and people with mycosis fungoides–type cutaneous T-cell lymphoma (MF-CTCL) to try to create a health outcome measure that better the reflects the experience of patients.

"As changes in technology, culture, and treatment affect how patients live with disease, we want measurement to evolve accordingly," Actelion senior director Mitchell Nagao said in a statement. Nagao is the medical head of Actelion's MF-CTCL treatment, Valchlor, a chemotherapeutic agent that won FDA approval last year in patients previously treated with skin-directed therapy. The drug won approval based on its ability to improve skin lesions, but other measures matter to patients, too.

A 2011 paper in the Journal of Clinical Oncology looked at the spectrum of endpoints and outcome measures for MF-CTCL. It emphasized the need for quality of life measures."Patients with [MF-CTCl] often suffer tremendously from symptoms related to their disease, the social stigmata of having obvious unsightly skin lesions, the psychological/emotional problems of living with a chronic and potentially lethal disease, and often financial hardships related to therapy," the authors wrote.

At the time the paper was written researchers relied on two measures of patient well-being, one of which was designed for all skin diseases, the other of which covered cancer therapies in general. By tapping into PatientsLikeMe's IT-linked network of MF-CTCL patients, Actelion hopes to create a measure that better reflects the situation for people with this rare cancer.

- read the release
- here's the 2011 paper