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 live, and we are delighted to unveil the major improvements we’ve made. We think you’ll find that not only is it easier to enter treatment information now, but the end result is more useful too. For a good overview, check out our screencast demonstrating how the new treatment reporting process works. Below are some of the most important changes. Easier updating To start, we’ve put all treatment updates on one page. We’ve made it easier to find and add new treatments, see what data has been entered, learn what data is missing and update or add information. Plus, we’ve made it simpler to confirm that your treatments have remained the same – something many members have asked for! More accurate dosing data We’ve upgraded our treatment database to include more accurate dosing information. In turn, we use this to help you enter more accurate information. …

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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 10% of patients buck this trend and experience their first symptoms before the age of 40; these patients are known as Young-Onset PD or YOPD for short. The R&D team here at PatientsLikeMe recently carried out a research study examining an aspect of PD that has only recently gained much attention, “non-motor symptoms.” When a clinician diagnoses PD, they are usually looking for a triad of cardinal features, specifically tremor, slowness, and stiffness. However, in the past 5-10 years it has been increasingly clear that patients with PD also experience a number of non-motor symptoms, ranging from dizziness to constipation, from a loss of sense of smell to hallucinations, and from apathy to urinary problems. Several of our members had mentioned in forum postings that they were finding non-motor symptoms, such as cognitive confusion and fatigue, to be a particular burden, so we decided to …

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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 spotting PatientsLikeMe t-shirts in the crowd. Paul was a presenter at the conference, and his session “Taking Control of Your Parkinson’s by Sharing Online” was well attended and received by current and future PatientsLikeMe members. One of the themes that came up repeatedly at the conference is that living with YOPD, like any other life-changing illness, can be a very isolating experience. The YOPN Conference presented its attendees the opportunity to spend the weekend learning more about their condition, expanding their knowledge about the latest treatments and choices, and most importantly, meeting other patients like them. As a community manager at PatientsLikeMe, much of my job is watching. I read the forum to observe what people are discussing, I look for questions and ideas on how we can improve different areas of the site, and watch as members learn and relationships grow. But, one of …

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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 of Medicine reported that compared to placebo, MS patients on Tysabri had a 42% lower risk of sustained disability progression over two years, and a 68% reduction in the risk of clinical relapse at one year. Compared to the small and imperceptible benefits from other drugs available at the time, this provided real hope for thousands of patients. Tysabri was voluntarily withdrawn in 2005, however, after a small number of cases of a rare condition called progressive multifocal leukoencephalopathy (PML). This extremely rare but usually fatal adverse event seemed particularly prone to happen in patients also taking immunosuppressive drugs; part of the standard toolkit in treating MS. It was reintroduced in 2006 but only within a strict protocol to minimize the risk of adverse events. Since the early days of our MS community, Tysabri has been a hot topic of conversation with several patients reporting …

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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 with us. Accelerated Cure Project for Multiple Sclerosis – a national nonprofit organization dedicated to curing MS by determining its causes. Myelin Repair Foundation – the only non-profit medical research foundation solely focused on identifying myelin repair drug targets that will lead to treatments for multiple sclerosis. Penn State Milton S. Hershey Medical Center – one of the leading research institutions in the field, particularly around issues of quality of life (QOL) for patients suffering from ALS. What do these partnerships mean? Together, we can open the healthcare dialogue by sharing and learning from one another. As we say in our Openness Philosophy, “we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system.

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 metabolism, will be conferred this September at the ASBMR Annual Meeting in Montréal, Canada. “I’m honored and excited to receive such a prestigious award,” says Dr. Brownstein. “The ASBMR is a fantastic organization with many brilliant experimental and clinical scientists. I look forward to the meeting in September.” Dr. Brownstein recently joined the PatientsLikeMe Research & Development team to ready its platform for the incorporation of genetic and biomarker information. PatientsLikeMe’s unique platform gives patients with life-changing illnesses sophisticated personalized outcome tools that previously were only available to clinical research centers like Yale where Dr. Brownstein completed her award winning work. The open data model of PatientsLikeMe and the thousands of active patients provide a unique new opportunity to do collaborative disease discovery and help improve patients’ lives. Dr. Brownstein will be responsible for defining and building the data structures that allow patients, for the …

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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 I began to read through, categorize, and analyze some of the comments users have posted on the site. We are happy to say that the results of our study were published this week in the peer-reviewed open access journal, the Journal of Medical Internet Research, in the paper entitled Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data. We, at PatientsLikeMe, think that patients can get more value from recording their health information when they share the results with one another – so that patients can learn not only from their own experience but also from the experience of others.As a first study, we looked at just one behavior on the site, the comments users post on one another’s profile. In many ways comments are not central to the site – …

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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 in the Senate 95-0, and in the House of Representatives 414-1, and President Bush is expected to sign it into law. Now, Americans can take advantage of genetic testing without fear of being dropped from their health insurance or fired from their job for having a pre-existing condition. In essence, a person’s genes are protected in the same manner as their age, gender, race, and religion (and if you think about it, genes are merely an extension of some of those things!). Before this bill became a reality, many individuals were paying in cash for genetic tests or even denying themselves information that could have prepared them for, prevented, or aided in treatment of a disease. For more information, see the AP article.

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 write: “studies show that the more likely culprit is ignorance… 85% of cancer patients were either unaware or unsure at the time of their diagnosis that participation in clinical trials was an option.” In addition, there are also systematic flaws in the disjointed way that trials take place which makes it difficult to get accepted into a trial and can make participation unsatisfying even if you do. Say you’ve got ALS (Lou Gehrig’s disease or Motor Neurone Disease), a progressive and incurable life-changing illness and you’re being treated at a specialist centre that runs a lot of clinical trials. Here’s a few scenarios that could happen: 1. The Drug X trial is full before you can participate. Even if you’re suitable for a trial, it’s a matter of chance as to whether you’ll be seen at the hospital during their recruitment window. National, online databases …

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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 could be embarassing. We recently published a paper in the European Journal of Neurology that’s a great example of this. For many years doctors have known that a small number of patients with ALS (~5%) develop frontotemporal dementia, which causes personality changes, unusual behaviour, and severe cognitive problems. A larger proportion (~33-50%) suffer much milder cognitive problems, such as getting words “stuck on the tip of their tongue”, finding it difficult to multi-task, or difficult to plan complex sequences of events like planning a vacation. A recent review in Lancet Neurology gave a thorough run-down of the literature, the ALS Association has published a guide for families, and there have even been two conferences held just on this topic. Despite this, our study of 247 ALS patients found that: 85% of patients were told they might experience problems walking only 11% were told they might …

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