ORE

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

Patient Experiences / By

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 […]

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

Patients as Partners: Managing High Blood Pressure questionnaire results

Patient Experiences / By

In this installment of our Patients as Partners blog series, we’re sharing results from the High Blood Pressure Management, Adherence, Attitudes and Health Behavior Instrument – whew, that’s a mouthful! Doctors and nurses can use the instrument to better understand how people manage high blood pressure at home, and can help everyone learn more about

Patients as Partners: Managing High Blood Pressure questionnaire results Read More »

Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results

1 Comment / ALS, Crohn's Disease, Epilepsy, Idiopathic Pulmonary Fibrosis, Organ Transplants, Patient Experiences, Pulmonary fibrosis, Ulcerative Colitis / By

Back at the beginning of April, we launched a new blog series called Patients as Partners that highlights the results and feedback PatientsLikeMe members give to questionnaires on our Open Research Exchange (ORE) platform. This time around, we’re sharing the results of the Perceived Medical Condition Self-Management Scale (PMCSMS), a health measure that looks at

Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results Read More »

Patients as Partners: The WHYSTOP Scale questionnaire results

Patient Experiences / By

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

Patients as Partners: The WHYSTOP Scale questionnaire results Read More »

PatientsLikeMe invites patients to lead research projects on Open Research Exchange

Patient Experiences / By

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

PatientsLikeMe invites patients to lead research projects on Open Research Exchange Read More »

Hypertension on the Open Research Exchange- A talk with pilot researcher Tamara Kear, PhD., R.N., CNS, CNN

Patient Experiences / By

We’ve been talking about the new PatientsLikeMe Open Research Exchange on the blog over the past few weeks, and today, we’d like to introduce another one of the pilot researchers. In case you haven’t heard, our researcher partners will be using ORE to pilot, deploy, share and validate new ways to measure diseases. And PatientsLikeMe

Hypertension on the Open Research Exchange- A talk with pilot researcher Tamara Kear, PhD., R.N., CNS, CNN Read More »

The Open Research Exchange- A talk with pilot researcher William Polonsky, Ph.D., CDE

Patient Experiences / By

You’ve probably seen some recent posts about PatientsLikeMe’s new Open Research Exchange. Medical researchers will be using our ORE website to pilot, deploy, share and validate new ways to measure diseases. And PatientsLikeMe members will have an opportunity to give feedback on their work, putting them – the patients – at the center of new medical

The Open Research Exchange- A talk with pilot researcher William Polonsky, Ph.D., CDE Read More »

The Open Research Exchange- A talk with Paul Tarini and Ben Heywood

Patient Experiences / By

Founded on a philosophy of “openness,” PatientsLikeMe aggregates patient-reported data from over 200,000 members on 2,000 diseases, analyzes them and shares the results with healthcare and life science companies to accelerate research and develop more effective treatments. With support from the Robert Wood Johnson Foundation, we’re now building the Open Research Exchange (ORE) so that researchers, clinicians,

The Open Research Exchange- A talk with Paul Tarini and Ben Heywood Read More »

PatientsLikeMe selects first pilot users for Open Research Exchange™

Patient Experiences / By

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

PatientsLikeMe selects first pilot users for Open Research Exchange™ Read More »

Scroll to Top