Research

PatientsLikeMe Announces Enhanced Treatment Reporting

Treatment reporting is a critical part of PatientsLikeMe. Sharing your information lets others see what treatments you’ve tried…and how well they’ve worked. It also gives you a precise record over time to show your doctors. We’ve had several requests to enhance our treatment reporting tools, and well, we listened. Our top-to-bottom treatment overhaul is officially …

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More Than Meets the Eye: Non-motor Symptoms in Young-onset Parkinson’s Disease

Most people think of Parkinson’s disease (PD) as a condition of aging, and most of the time they’re right. Looking at the population as a whole, about 1-2% of people over the age of 65 have PD, and it’s usually a condition that is most severe in patients in their 70’s and 80’s. However, about …

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PatientsLikeMe at the Young-Onset Parkinson’s Network Conference

PatientsLikeMe was a proud sponsor of the National Parkinson’s Foundation Young-Onset Parkinson’s Network (YOPN) Conference in Atlanta, GA last week. The event, coordinated by and for people living with Young-Onset Parkinson Disease (YOPD), was a huge success. Paul Wicks and I (Maureen Oakes) enjoyed working at the booth, meeting many of our current members and …

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Tysabri and the 2 New Reported Cases of PML

Members of our Multiple Sclerosis (MS) community have been discussing this story in the Boston Globe which reports severe adverse events experienced by two European MS patients on the drug Tysabri (Natalizumab). Tysabri is a monoclonal antibody which seems to have a potent effect on MS; the original trial published in the New England Journal …

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PatientsLikeMe Announces New Partnerships

At PatientsLikeMe, our Core Values drive all of our business processes including selection of partners. We are proud to announce our three newest partnerships which include both nonprofit and academic institutions. Note: At all times, our members can access information about what we do with their data, how we make money, and who is partnering …

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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 …

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What can happen when patients have access to one another’s data

There is growing interest in and demand for access to personal health information and tools to review and discuss this information. But why? What do patients get from reviewing health information? More research is needed to know the answer.To examine this question and understand what value users get from one another’s information, Michael Massagli and …

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Genetic Discrimination: The End Before the Beginning

Updated:  The Genetic Information Nondiscrimination Act (GINA) was signed into law by President Bush on May 21, 2008. In a victory for openness and personalized medicine, on May 1, Congress sent President Bush a bill forbidding employers and health insurers from discriminating on the basis of genetic information. The Genetic Information Nondiscrimination Act was passed …

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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 …

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