SOURCE: PatientsLikeMe


January 26, 2010 08:30 ET

PatientsLikeMe and UCB Open Free Online Community for People With Epilepsy in the U.S.

Pharmaceutical, Social Media Leaders Examine Real-World Impact of Epilepsy

CAMBRIDGE, MA and ATLANTA, GA--(Marketwire - January 26, 2010) - Today, PatientsLikeMe, the leading online community for people with life-changing conditions, and biopharmaceutical company UCB open the doors to a free online community for people living with epilepsy in the U.S. Focused on learning from patients' real-world experiences, the online community allows members to create profiles that record and share their treatments, symptoms, as well as seizure type, frequency and severity.

"As a patient-centered company, we are constantly seeking innovative ways to enhance and adjust our approaches to meet patient needs," says Iris Loew-Friedrich, Executive Vice-President, Chief Medical Officer, UCB. "We believe this community will be a source of information that will allow us to better understand people living with epilepsy and may help us design clinical programs that incorporate real-world patient needs and experiences in a measurable way."

Among the research being conducted, PatientsLikeMe and UCB are analyzing anonymized 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).

Adds Ben Heywood, co-founder and president of PatientsLikeMe, "Patients are telling us that, in addition to seizures, there are many more significant aspects to the disease. It's this type of real-world data and insight about epilepsy that is going to change how this disease is treated."

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

Last June, PatientsLikeMe and UCB announced this strategic partnership to build an online community for people living with epilepsy, which debuts today at

Epilepsy is a chronic neurological disorder affecting approximately 50 million people worldwide and between 2.5 and 3 million Americans.(1, 2) An often stigmatized and misunderstood condition, epilepsy can strike anyone at any time, but new cases are most common among young children and older adults. The number of people living with epilepsy in the U.S. is expected to rise as the population ages.(1) There is no cure for epilepsy, though treatments have improved in the last ten to twenty years.(3)

About UCB

UCB, Brussels, Belgium ( is a biopharmaceutical company dedicated to the research, development and commercialization of innovative medicines with a focus on the fields of central nervous system and immunology disorders. Employing about 10 000 people in over 40 countries, UCB achieved revenues of 3.6 billion Euro in 2008. UCB is listed on Euronext Brussels (symbol: UCB).

About PatientsLikeMe

PatientsLikeMe ( is the leading online health community for patients with life-changing conditions. PatientsLikeMe creates new knowledge by charting the real-world course of disease through the shared experiences of patients with ALS, multiple sclerosis, Parkinson's, HIV, mood conditions (including depression, bipolar, anxiety, OCD and PTSD), fibromyalgia, chronic fatigue syndrome and epilepsy. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world. PatientsLikeMe endeavors to create the largest repository of real-world disease information to help accelerate the discovery of new, more effective treatments.

Forward looking statement

This press release contains forward-looking statements based on current plans, estimates and beliefs of management. Such statements are subject to risks and uncertainties that may cause actual results to be materially different from those that may be implied by such forward-looking statements contained in this press release. Important factors that could result in such differences include: changes in general economic, business and competitive conditions, effects of future judicial decisions, changes in regulation, exchange rate fluctuations and hiring and retention of its employees.


(1) Epilepsy Foundation. Epilepsy: Just the Facts. March 2008.

(2) U.S. Centers for Disease Control and Prevention. Epilepsy Fast Facts. March 2009. Accessed at:

(3) Brodie MJ, Kwan P. Staged approach to epilepsy management. Neurology. 2002;58 (suppl 5):S2-S8.


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