Bringing the patient voice to clinical trials

PatientsLikeMe has a long tradition of bringing the patient voice into drug discovery and development, but it’s only been in the last year or two that industry has been tuning in to hear what that voice is saying about clinical trials. For the last 18 months, we’ve been asking many of our members about their… Continue reading Bringing the patient voice to clinical trials

Making sure conferences are “Patients Included”

Picture this: you’re a medical professional and are about to open the doors to a conference you’ve spent years pulling together. You’ve booked your venue, have your sponsors lined up, got top headliners to give keynotes, picked your Twitter hashtag and have invited every industry pro to be a part of the event. In walk… Continue reading Making sure conferences are “Patients Included”

Throwback Thursday: Paul discusses what happens when trial participants realize they hold the power

Just about a year ago, PatientsLikeMe’s Paul Wicks, PhD, Vice President of Innovation, wrote a blog post about what happens when trial participants realize they hold the power in clinical trials. He began his early experiences with ALS patients and clinical trials, but then fast-forwarded to how PatientsLikeMe members have replicated a clinical trial, started… Continue reading Throwback Thursday: Paul discusses what happens when trial participants realize they hold the power

PatientsLikeMe and Actelion to develop new patient-reported measure for mycosis fungoides-type cutaneous T-cell lymphoma (MF-CTCL)

Patients To Share Their Experiences, Help Researchers Better Characterize Disease And Develop Treatment Strategies  CAMBRIDGE, Mass.—August 5, 2014—PatientsLikeMe and Actelion Ltd. (SIX: ATLN) are partnering in a research initiative to create a new patient-reported outcomes tool for the rare form of non-Hodgkin’s lymphoma called MF-CTCL. The collaboration will leverage PatientsLikeMe’s Open Research Exchange (ORE), an… Continue reading PatientsLikeMe and Actelion to develop new patient-reported measure for mycosis fungoides-type cutaneous T-cell lymphoma (MF-CTCL)

PatientsLikeMe selects first pilot users for Open Research Exchange™

Researchers and Patients to Test New Measures for Hypertension, Treatment Burden, Appetite and Diabetes, Primary Palliative Care CAMBRIDGE, Mass.— August 13, 2013—PatientsLikeMe has named the first four researchers and teams who will pilot test its new Open Research Exchange™ (ORE) platform. Supported by a $1.9 million grant from the Robert Wood Johnson Foundation, ORE was… Continue reading PatientsLikeMe selects first pilot users for Open Research Exchange™

PatientsLikeMe Calls For Researcher Participation in New Open Research Exchange™ Platform

Company Names Scientific Advisory Board for World’s First Open-Participation Research Platform for Patient-Centered Health Outcome Measures CAMBRIDGE, Mass.— May 20, 2013—Today, PatientsLikeMe announces an open call for medical researchers to be among the first pilot users of its Open Research Exchange™ (ORE) platform (www.openresearchexchange.com). ORE puts patients at the center of the clinical research process… Continue reading PatientsLikeMe Calls For Researcher Participation in New Open Research Exchange™ Platform

PatientsLikeMe Unveils New Tool to Match Patients with Clinical Trials Worldwide

Launch at European NHS Healthcare Innovation Expo Comes as PatientsLikeMe Chairman Calls for Revolution in Disease Measurement CAMBRIDGE, Mass. — Mar 13, 2013 — The U.S.-based patient network and real-time research platform PatientsLikeMe unveils its global clinical trials tool today at Europe’s Healthcare Innovation Expo 2013, hosted by the National Health Service (NHS). The free tool, unveiled today by… Continue reading PatientsLikeMe Unveils New Tool to Match Patients with Clinical Trials Worldwide

PatientsLikeMe in the News

It’s been a busy couple of weeks at PatientsLikeMe.  Here are a few media highlights showcasing all the exciting things that are going on, from new partnerships with Aetna and Boehringer to the major grant we were awarded by the Robert Wood Johnson Foundation to TED2013 Fellow Paul Wicks’ presentation at TED2013 last week. PatientsLikeMe… Continue reading PatientsLikeMe in the News

The Ups and Downs of Parkinson’s Disease

We are all too aware that Parkinson’s disease (PD) is a progressive illness, with tremors, difficulty walking and other symptoms usually getting worse over time.  Here at PatientsLikeMe, and in the clinic, that progression is measured with the Parkinson’s Disease Rating Scale (PDRS). Although you can never really simplify a whole disease down to a… Continue reading The Ups and Downs of Parkinson’s Disease

PatientsLikeMe at Medicine 2.0

With more than 500 attendees from 36 countries, the 5th Annual Medicine 2.0 World Congress took place September 15-16th at Harvard Medical School here in Boston.  Among these attendees were several PatientsLikeMe leaders, including keynote speaker Jamie Heywood and conference presenters Sally Okun and Paul Wicks. In an unusual twist, all three PatientsLikeMe speakers got… Continue reading PatientsLikeMe at Medicine 2.0