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 www.patientslikeme.com/epilepsy/community.
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
- Epilepsy Foundation. Epilepsy: Just the Facts. March 2008. Accessed at: http://www.epilepsyfoundation.org/newsroom/upload/Epilepsy-Facts-and-Figures.pdf.
- U.S. Centers for Disease Control and Prevention. Epilepsy Fast Facts. March 2009. Accessed at: http://www.cdc.gov/epilepsy/basics/fast_facts.htm
- Brodie MJ, Kwan P. Staged approach to epilepsy management. Neurology. 2002;58 (suppl 5):S2-S8.
PatientsLikeMe® (www.patientslikeme.com) 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 disease, HIV, mood conditions (including depression, bipolar, anxiety, OCD and PTSD), fibromyalgia, chronic fatigue syndrome/myalgic encephalomyelitis, epilepsy and organ transplants. 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.