Ever wonder how epilepsy affects the patient — the whole patient? A patient-reported outcome (PRO) is a questionnaire commonly used in the clinical world to asses a patient’s quality of life (QOL) for research studies. Most of the time patients never get to see their test results, much less see them plotted over time. That’s… Continue reading Manage your epilepsy like a PRO
Tag: quality of life
Real-World Patients, Real-World Epilepsy:
An Interview with Blueyedgoddez
An interview with epilepsy community member, Blueyedgoddez
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… Continue reading PatientsLikeMe and UCB Open Free Online Community for People With Epilepsy in the U.S.
A Year in Review: PatientsLikeMe in 2009
As 2009 comes to an end, we want to take this opportunity to thank all of our members, partners and general fans for another great year. Here’s a recap of some of the exciting happenings at PatientsLikeMe these past 12 months. Wishing you all a Happy New Year! Community Milestones This year, the 15+ disease… Continue reading A Year in Review: PatientsLikeMe in 2009
Does It Work? Lithium and ALS
by James Heywood Update (March 7, 2008): PatientsLikeMe ALS Lithium Research released. Does it work? On February 12th of this year, Proceedings of the National Academy of Sciences (one of the leading science journals) published a paper entitled — Lithium Delays Progression of Amyotrophic Lateral Sclerosis. After 10 years researching ALS, I believe it is… Continue reading Does It Work? Lithium and ALS
The growth of social media in health care
According to a December 2007 iCrossing survey cited by Jane Sarasohn-Kahn in her Health Populi blog “34% of Americans turn to social media for health research.” Jane points to PatientsLikeMe and others as “proof of the reality of social media in health is alive and well and healing”, and observes that “increasing numbers of people… Continue reading The growth of social media in health care