Biopharma company UCB and PatientsLikeMe, the leading online community for people with life-changing conditions, today announced a strategic partnership to create an online, open epilepsy community that captures real-world experiences of people living with epilepsy in the US.
Scheduled to launch in early 2010, this platform will be designed to collect, analyse and reflect information received from people with epilepsy, regardless of their diagnosis, prognosis or treatment regimen.
“UCB has a longstanding commitment to improving the lives of people living with severe conditions,” said Roch Doliveux, Chief Executive Officer, UCB.
“This partnership is exciting because for the first time, patients will be able to contribute their experiences and real-world data to ongoing epilepsy research.”
UCB is the first pharmaceutical company to partner with PatientsLikeMe to launch a patient community. The new epilepsy community will help create a platform for people with epilepsy that will enable UCB to better understand patients, their lives and treatment experiences.
Participants will record their real-time day-to-day progress in controlling their seizures and achieving their treatment goals, and share that with the community to help patients, caregivers, researchers and industry learn more about the disease.
“What we’re seeing on our site every day is that patients are interested in learning more about their disease” says Ben Heywood, President and Co-founder of PatientsLikeMe.
“By joining forces with industry leaders like UCB, we can turn up the volume of the patient voice in companies who are committed to hearing it and working toward better treatments and better care.”
Epilepsy is a chronic neurological disorder affecting approximately 50 million people worldwide and between 2.5 and 3 million Americans. An often stigmatised 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 US is expected to rise as the population ages. There is no cure for epilepsy, though treatments have improved in the last ten to twenty years.