Four years ago this Spring, PatientsLikeMe launched the ALS community with very specific goals in mind – to help patients like you take control of your disease, share and learn from one another, have a voice in real-world research and inform the companies that make your drugs and can improve your care. Together, we have… Continue reading ALS Awareness 2010: A Four Year Journey With Our PALS
Category: Research
PatientsLikeMe – Out & About and OnCall
The PatientsLikeMe team has been traveling around the globe recently talking about the power of real-world patient data in changing healthcare. You may have heard about our executives at industry conferences, government hearings, or even on TV. Highlights below. Last month, PatientsLikeMe Co-founder and President Ben Heywood was on Fox Business News talking about how… Continue reading PatientsLikeMe – Out & About and OnCall
Where are the Cures?
An interview with Myelin Repair Foundation
PatientsLikeMe partner, Myelin Repair Foundation (MRF), is a nonprofit organization devoted to reducing the time it takes to discover and develop treatments for multiple sclerosis (MS) patients. Recently, the MRF launched a campaign called “Where are the Cures?” – a site dedicated to a greater understanding of the barriers slowing the discovery and development of… Continue reading Where are the Cures?
An interview with Myelin Repair Foundation
FDA’s New Guidance on Patient-Reported Outcomes
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
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
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
PatientsLikeMe @ The 20th International ALS/MND Symposium in Berlin
The 20th International Symposium on ALS/MND took place (December 8th-10th) in Berlin, Germany. This is the 4th ALS Symposium attended by PatientsLikeMe, and certainly the most exciting in terms of new findings. The annual symposium is a tremendous opportunity for researchers from around the world to meet and share new developments – it’s the big… Continue reading PatientsLikeMe @ The 20th International ALS/MND Symposium in Berlin
PatientsLikeMe Facing World AIDS Day 2009
Every December 1st, we join hands with the HIV community at large in recognition of World AIDS Day. The theme of World AIDS Day this year is leadership — a fitting theme for the 2500+ patients who are leading the way through openness in the PatientsLikeMe HIV community. These leaders have chosen to share their… Continue reading PatientsLikeMe Facing World AIDS Day 2009
Research Award: Patients Informing Practice
Earlier this Fall at Medicine 2.0, PatientsLikeMe was honored to receive the inaugural Journal of Medical Internet Research (JMIR) Award for our paper on what we can learn about drugs post market from patients reporting treatment experiences on PatientsLikeMe. Once a drug is on the market, it can be difficult to evaluate how it’s working… Continue reading Research Award: Patients Informing Practice
PatientsLikeMe Adds Online Community for People With Chronic Fatigue Syndrome
PatientsLikeMe made the following announcement last night at the TEDMED conference. For more on Jamie Heywood’s presentation, check out what people are saying on Twitter. – – – – – – – PATIENTSLIKEME ADDS ONLINE COMMUNITY FOR PEOPLE WITH CHRONIC FATIGUE SYNDROME Researchers Use Open Medical Network to Measure Real-World Impact of XMRV Virus Cambridge,… Continue reading PatientsLikeMe Adds Online Community for People With Chronic Fatigue Syndrome