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: Research
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 SYNDROMEResearchers Use Open Medical Network to Measure Real-World Impact of XMRV Virus Cambridge, MA–October… Continue reading PatientsLikeMe Adds Online Community for People With Chronic Fatigue Syndrome
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
Gambling in online PD patients higher than previously reported
When most people think of Parkinson’s disease (PD), they think of a shuffling gait, a shaky hand, and slowness of movement. As awareness has increased of the non-movement symptoms of PD, such as hallucinations and depression, we’ve seen the psychological consequences the disease can have too. More recently, studies in the scientific literature have been… Continue reading Gambling in online PD patients higher than previously reported
PatientsLikeMe Geneticist, Catherine Brownstein, Ph.D. Wins Prestigious Research Award
PatientsLikeMe is proud to announce that team geneticist Catherine Brownstein, Ph.D. will receive the 2008 Young Investigator Award from the American Society for Bone and Mineral Research (ASBMR). The award, given for Dr. Brownstein’s post-graduate creation and study of the Klotho/HYP double knockout mouse, which further elucidates the genes responsible for bone density and phosphate… Continue reading PatientsLikeMe Geneticist, Catherine Brownstein, Ph.D. Wins Prestigious Research Award
Let’s make clinical trials more rewarding for patients
I came across this Wall Street Journal article earlier this week which details how patients with life-changing illnesses are using online services such as EmergingMed to help them enroll in clinical trials. The article points out that only 3% of adult cancer patients participate in trials, citing lack of awareness as a crucial factor. They… Continue reading Let’s make clinical trials more rewarding for patients
ALS Patients: Give us the truth about cognitive change
One of the things we’re most proud of at PatientsLikeMe is our ability to rapidly carry out research. There are some obvious benefits online: patients can can take part whenever they want, take as much time as they need (often using assistive technology), and are more likely to be open and honest about subjects that… Continue reading ALS Patients: Give us the truth about cognitive change
Does It Work? Lithium and ALS
by James Heywood Update (March 7, 2008): PatientsLikeMe ALS Lithium Research released. Does it work? On February 12th of this year, Proceedings of the National Academy of Sciences (one of the leading science journals) published a paper entitled — Lithium Delays Progression of Amyotrophic Lateral Sclerosis. After 10 years researching ALS, I believe it is… Continue reading Does It Work? Lithium and ALS
PatientsLikeMe Receives Its First Scientific Award
PatientsLikeMe, the leading treatment and outcomes sharing website for people with life-changing diseases, is proud to announce its first scientific poster award. Today, at the 20th anniversary meeting of the British Neuropsychiatry Association (BNPA), Dr. Paul Wicks, resident researcher at PatientsLikeMe.com received the Association’s first prize for the best poster presentation, entitled “Telesocial medicine for… Continue reading PatientsLikeMe Receives Its First Scientific Award