Enabling patients to learn from each other

We work with patient communities to help people suffering from diseases to learn more about their conditions as well as share their experiences with each other. In 2009, UCB and PatientsLikeMe®, the leading online community for people with life-changing conditions, opened the doors to a free online community for people living with epilepsy in the U.S. By the end of 2010, we count approximately 3 500 registered patients on the online community.

This online community allows members to create and share profiles that describe their treatments and symptoms, as well as the type, frequency and severity of their seizures. With the consent of the community’s members, UCB and PatientsLikeMe® are conducting an anonymous online clinical survey via the site to measure patients’ quality of life, including cognitive, social and physical functions. Results from the survey, which started in November 2009, show that patients are most concerned about the cognitive impact of epilepsy, such as memory loss, fatigue or lack of concentration.

UCB and PatientsLikeMe® are also taking the lead in 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 U.S. Food and Drug Administration (FDA).

Leaning from the patient experiences in the U.S., UCB launched other on-line resources for epilepsy patients in Spain (www.vivirconepilepsia.es) and in Japan (www.tenkan.info).