8 February 2010 - PatientsLikeMe, an online health community, and Belgian biopharmaceutical company UCB SA (EBR: UCB) unveiled on 26 January a free online community for people living with epilepsy in the US.

The online community allows members to create profiles that record and share their treatments, symptoms, as well as seizure type, frequency and severity.

Iris Loew-Friedrich, executive VP and chief medical officer at UCB, said the company believes that this community will be a source of information that will allow UCB to better understand people living with epilepsy and that it may help the company design clinical programmes that incorporate real-world patient needs and experiences in a measurable way.

Among the research being conducted, PatientsLikeMe and UCB are analysing anonymised data shared by participating epilepsy patients, with their consent, via an online clinical survey built into the site to measure patients' quality of life (including cognitive, social and physical function). Completed by 60 patients testing the site since mid-November, initial survey results show the patients are most concerned with the cognitive impact of living with epilepsy (such as lack of concentration or memory loss).

To better understand the impact of medications that treat epilepsy in the real world, PatientsLikeMe and UCB are also implementing a drug safety programme within this patient community. The programme is designed to capture and report adverse events associated with approved UCB epilepsy therapies to the US Food and Drug Administration (FDA).

((Comments on this story may be sent to This e-mail address is being protected from spambots. You need JavaScript enabled to view it ))