Press
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, Mass., Jan 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 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
REFERENCES
- 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.
About PatientsLikeMe
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 and chronic fatigue syndrome/myalgic encephalomyelitis. 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.
Researchers Use Open Medical Network to Measure Real-World Impact of XMRV Virus
PatientsLikeMe (www.patientslikeme.com), the leading online community for people with life-changing conditions, announces the expansion of its fibromyalgia community to welcome patients with chronic fatigue syndrome (CFS), also know as myalgic encephalomyelitis (ME). By sharing information about their experience with CFS, patients can now find others just like them, including other patients who may have the newly discovered xenotropic murine leukemia virus-related virus (XMRV). The purpose of this expansion is for PatientsLikeMe to research the impact XMRV has on CFS patients.
"With 1 million patients diagnosed with CFS, and potentially 10 million Americans who could be infected with the XMRV virus, there is an unique opportunity to use the power of our open medical network to understand this illness and accelerate the validation and development of new biomarkers and treatments," says Jamie Heywood, co-founder and chairman of PatientsLikeMe.
There are currently more than 7,000 patients, many who have CFS, in the PatientsLikeMe fibromyalgia community sharing meaningful data for researchers to analyze about the condition. As part of this expansion, the PatientsLikeMe platform will allow patients who test positive for XMRV to indicate that on their profiles, much how ALS and Parkinson's patients can now add their genetic information.
Adds David S. Williams III, head of business development at PatientsLikeMe, "This discovery may spur research into the efficacy of anti-retrovirals for patients with CFS, which could have a dramatic impact on the $10 billion market for these medications."
Heywood will announce the new CFS community on stage at the health technology conference TEDMED in San Diego, CA today. CFS marks the 17th condition available to patients on PatientsLikeMe, which now boasts more than 45,000 patients sharing health data on treatments, symptoms and outcomes. The company's next community for people with epilepsy is scheduled to launch in early 2010. More about PatientsLikeMe partnerships can be found on its partner site: http://partners.patientslikeme.com.
About PatientsLikeMe
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, HIV, fibromyalgia, Chronic Fatigue Syndrome, and mood conditions (including depression, bipolar, anxiety, OCD and PTSD). 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.