Back in September, Sally Okun, Vice President of Advocacy, Policy and Patient Safety, and community moderator Molly Cotter, attended the FDA public meeting on Parkinson’s disease (PD) along with PatientsLikeMe member Gary (tupelo). We posted some interesting developments from the meeting in the forum, but we also caught up with Gary for his perspective on… Continue reading A patient’s perspective: member Gary reports back from the FDA public meeting on Parkinson’s disease
Tag: Research
Sally Okun explains the new research collaboration with the FDA
Yesterday, we announced a new research collaboration with the U.S. Food and Drug Administration (FDA) that will explore how patient-reported data can lead to new insights about drug safety. It’s the first time the FDA will analyze patient-generated data for pharmacovigilence (aka drug safety). But we’re no strangers to drug safety. Check out some of… Continue reading Sally Okun explains the new research collaboration with the FDA
PatientsLikeMe and the FDA Sign Research Collaboration Agreement
WASHINGTON D.C., June 15, 2015—PatientsLikeMe and the U.S. Food and Drug Administration (FDA) have signed a research collaboration agreement to determine how patient-reported data can give new insights into drug safety. Under the collaboration, PatientsLikeMe and the FDA will systematically explore the potential of patient-generated data to inform regulatory review activities related to risk assessment… Continue reading PatientsLikeMe and the FDA Sign Research Collaboration Agreement
PatientsLikeMe Appoints Jason Johnson Executive Vice President and Head of R&D
CAMBRIDGE, MA, May 18, 2015—PatientsLikeMe today announced it has appointed Jason Johnson, PhD, as Executive Vice President and head of research and development (R&D). Johnson leads the company’s research, data science, and informatics teams, which focus on analyzing and merging patient-reported and other data types to develop models of disease progression and generate new insights… Continue reading PatientsLikeMe Appoints Jason Johnson Executive Vice President and Head of R&D
What can you do to challenge ALS in May?
It’s been 23 years since the U.S. Congress first recognized May as ALS Awareness Month in 1992, and while progress towards new treatments has been slower than we’ve all hoped, a lot has still happened since then. In 1995, Riluzole, the first treatment to alter the course of ALS, was approved by the FDA. In… Continue reading What can you do to challenge ALS in May?
PatientsLikeMe and AstraZeneca announce global research collaboration
Five-year agreement focused on improving health outcomes for patients across main therapy areas CAMBRIDGE, MA, April 13, 2015—In a major step forward to make patient-centric evidence a cornerstone of scientific discovery and development, PatientsLikeMe and AstraZeneca (NYSE: AZN) have signed a five-year agreement to provide access to PatientsLikeMe’s global network… Continue reading PatientsLikeMe and AstraZeneca announce global research collaboration
Patients as Partners: Hallucinations and Parkinson’s disease questionnaire results
It’s time for another Patients as Partners post, and today, we’re happy to share the results of the Hallucinations and Parkinson’s disease questionnaire. In March 2014, more than 500 PatientsLikeMe members living with Parkinson’s disease (PD) took part in an Open Research Exchange (ORE) questionnaire about their condition. They worked with Dennis Chan and Ruth… Continue reading Patients as Partners: Hallucinations and Parkinson’s disease questionnaire results
Results! PatientsLikeMe diabetes members share about challenges and concerns
Earlier this year, more than 450 PatientsLikeMe members from the type 1 and type 2 diabetes communities took part in a new survey from our partners at Kaiser Permanente Colorado’s Institute of Health Research. (Thank you all for adding your voices!) Members shared about everything from the day-to-day challenges of living with diabetes to the… Continue reading Results! PatientsLikeMe diabetes members share about challenges and concerns
Patients as Partners: The WHYSTOP Scale questionnaire results
We’re really excited to launch a new series here on the blog called Patients as Partners. The series will highlight the results and feedback that PatientsLikeMe members give on questionnaires from our Open Research Exchange (ORE) platform. What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer… Continue reading Patients as Partners: The WHYSTOP Scale questionnaire results
PatientsLikeMe invites patients to lead research projects on Open Research Exchange
New $2.4 Million Grant from the Robert Wood Johnson Foundation Supports Two Patient-Led Projects in 2014 to Develop, Test and Validate Patient-Reported Outcomes CAMBRIDGE, Mass.—March 27, 2014—Expanding on its mission to put patients at the center of clinical research, PatientsLikeMe today announced that patients can now apply to lead the development of new health outcome… Continue reading PatientsLikeMe invites patients to lead research projects on Open Research Exchange