We’re big fans of patient-reported outcomes (PROs) here at PatientsLikeMe, defined by the Food & Drug Administration (FDA) as: “A measurement based on a report that comes directly from the patient about the status of a patient’s health condition without amendment or interpretation of the patient’s response by a clinician or anyone else.” The self-report… Continue reading FDA’s New Guidance on Patient-Reported Outcomes
Category: Epilepsy
PatientsLikeMe Acquires Online Pain Management Company, ReliefInsite
Today’s news release announcing acquisition of ReliefInsite. Want to receive future announcements? Sign up for our RSS feed on the press page. – – – FOR IMMEDIATE RELEASE PATIENTSLIKEME ACQUIRES ONLINE PAIN MANAGEMENT COMPANY, RELIEFINSITE 20,000 Patients Reporting Moderate to Severe Pain on PatientsLikeMe Cambridge, MA and New York City, NY – February 16, 2010… Continue reading PatientsLikeMe Acquires Online Pain Management Company, ReliefInsite
Manage your epilepsy like a PRO
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
Video: Introducing the New Epilepsy Community
In honor of the launch of the new PatientsLikeMe Epilepsy community this week, we have created a video highlighting how patients are coming together to share their experiences with epilepsy and learn from others. It’s now available on our PatientsLikeMe Epilepsy YouTube page. This short video includes quotes from some of our members about what… Continue reading Video: Introducing the New Epilepsy Community
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
Harnessing New Media for Patient Advocacy (Part II)
A few weeks ago, I was invited to present on behalf of PatientsLikeMe at the Arthritis Foundation workshop held in Newport, RI. The presentation was on how to “harness new media for patient advocacy” – the same as what I presented at a workshop for non-profits in northern New England in August. This time the… Continue reading Harnessing New Media for Patient Advocacy (Part II)
An Interview with UCB’s Peter Verdru
Last month, PatientsLikeMe announced our partnership with biopharma leader, UCB, to launch a new community for people with epilepsy. Below is an interview with UCB’s Vice President of Clinical Research, Peter Verdru, MD. David S. Williams III, head of PatientsLikeMe business development, recently spoke with Peter about the forthcoming epilepsy community, adverse event reporting, and… Continue reading An Interview with UCB’s Peter Verdru
UCB and PatientsLikeMe Partner to Give People With Epilepsy a Voice in Advancing Research
Today is an exciting day for PatientsLikeMe. In a first-of-its-kind industry-patient partnership, PatientsLikeMe is joining forces with biopharma company, UCB, to launch a new community for people with epilepsy to capture real-world experiences of the disease and help advance research. The news release announcing the partnership is below. ****** BRUSSELS, BELGIUM and CAMBRIDGE, MA–(Marketwire –… Continue reading UCB and PatientsLikeMe Partner to Give People With Epilepsy a Voice in Advancing Research