Research

It’s Clinical Trials Day, and patients are driving change

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Today is Clinical Trials Day – celebrated to bring more attention to public health and also to recognize the contribution of the patients and healthcare professionals who make clinical research possible. At PatientsLikeMe, it’s members who are changing the way clinical trials are designed. Bringing the patient voice to clinical trials has long been part of the PatientsLikeMe mission. Jeremy Gilbert, Vice President, PLM Health and Paul Wicks, Ph.D., Vice President, Innovation, sat down with us last year to talk about the importance of putting patients at the center of drug discovery and development. Check out their Q&A here. Recently, Paul Wicks touched on the purpose behind the latest PatientsLikeMe study on clinical trial design involving the patient perspective, and why organizations need to work on improving their trial process: “As researchers we know that clinical trials are the best tool we have for identifying new, safe, effective treatments. Patients know this, too, and they’re motivated to take part. But what this research tells us is that actually participating in a trial is not a fun experience; about as much fun as dealing with the worst airlines, banks, or utility companies, and we all know how that can be. This …

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ALS Reversal: A chat with Duke’s Dr. Rick Bedlack

1 Comment / ALS, Patient Experiences / By

“This is the fastest enrolling trial in ALS history.”   A brightly-colored blazer and the determination to make a difference for ALS patients are two of Dr. Rick Bedlack’s defining characteristics. Dr. Bedlack is a tenured associate professor of Medicine/Neurology at Duke University. He’s also the director of the Duke ALS Clinic that’s partnering with PatientsLikeMe in the current Lunasin study. We recently spoke with him about his background with ALS and the ins and outs of the study. He saw his first patient with ALS in the late 1990s during his residency at Duke.  He says, “I remember being amazed by the person’s history and neurological exam findings, intrigued by the mysteries of why this was happening, and horrified when I heard my attending physician say ‘you have 2-3 years. There is nothing we can do. Go and get your affairs in order.’” Driving home that day, he decided to build a program for people with ALS that would give them options for living the best possible life with the disease and for participating in research that would stimulate some hope. Fast forward to March of 2016 when the Lunasin study started. What’s Lunasin and why does it matter to the …

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Largest Patient Poll on ACA Shows Patients Value Health Care Law More Than the General Population, Are Less Inclined to Want a Repeal

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Lowering Costs, Coverage for Pre-existing Conditions Remain Top Priorities; If Changes Are Required, Individual Mandate Should Go   CAMBRIDGE, Mass., February 7, 2017—As Congress and the White House continue to discuss potential changes to the Affordable Care Act (ACA), PatientsLikeMe revealed results from the first large-scale poll to assess patient priorities for the health care law. The poll’s 2,197 respondents are among the estimated 133 million Americans living with chronic conditions. Sally Okun, PatientsLikeMe’s Vice President of Advocacy, Policy and Patient Safety, said the poll gives voice to those who may be most heavily impacted by changes to the law. “Regardless of your political leaning, the great equalizer is that we’ll all become sick one day. At this time of uncertainty about the future of health care, listening to the voice of patients today will illuminate the path forward for all of us.” Key findings from the poll show that overall, patients have the same concerns as the general population about health care costs, but see benefits in the law that the healthy may have overlooked: More than half (57%) believe the ACA has been helpful to people living with chronic conditions. Nearly half (46%) feel the ACA needs only …

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A PatientsLikeMe researcher’s take on the opioid crisis and new prescribing regulations

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Meet Emily (EmilyMcNaughton), a PatientsLikeMe researcher with more than ten years of experience in both the private and public sector. She’s here to weigh in on the recent Boston Globe article addressing the aftermath of the opioid crisis. New prescribing regulations have some doctors hesitant to prescribe these drugs, but that could prove more harmful to the patients who rely on them for pain control. Check out the Boston Globe article, and see what Emily has to say below.   A researcher’s perspective Prescription opioid medications have been widely discussed over the past 15 years, especially with the surge of prescriptions dispensed during the 2000s, which created an epidemic of abuse and overdose-related deaths. Because the prescription-opioid landscape seems to be constantly changing, people all across the medical, public health, regulatory and pharmaceutical sectors have been working to find solutions that will still allow patients to access their prescribed pain medications while minimizing problems with abuse, misuse, death, and product diversion (when patients either share, give or sell their prescription medications, or medications are stolen). Many would agree that it’s been helpful to increase awareness, education and open communication between doctors and patients about these medications, but some aspects of restricting …

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PatientsLikeMe Launches Virtual Trial for ALS Patients

2 Comments / ALS, Conditions, Research / By

Study With Major Academic Medical Center to Evaluate the Potential of the Soy Peptide Lunasin to Reverse ALS Symptoms DURHAM, N.C., October 25, 2016—PatientsLikeMe and The Duke ALS Clinic have just completed enrollment in a virtual trial designed to test whether Lunasin, a peptide found in soy and some cereal grains, is helpful or harmful to patients living with amyotrophic lateral sclerosis (ALS). The Lunasin Virtual Trial is the first study of the supplement in ALS patients and follows a review analyzing its potential to reverse ALS in ALSUntangled, a website for clinicians, patients and researchers to explore alternative treatments. Duke ALS Clinic Director and ALSUntangled Founder Richard Bedlack, MD, said he first heard about Lunasin’s potential from Mike McDuff, an ALS patient who took the supplement and experienced dramatic improvements in speech, swallowing and limb strength. “I reviewed Mike’s records and reports, and both his diagnosis and his improvements appeared real,” Bedlack said. “Of course, Mike might have an ALS mimic we don’t know how to test for, or his body may have found a way to beat ALS independent of treatment. But there is one more possibility: his Lunasin regimen might have actually worked. I was compelled to …

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PatientsLikeMe Names Marni Hall Senior Vice President

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Former Director within the FDA to Spearhead Company’s Research and Policy Initiatives CAMBRIDGE, Mass., July 11, 2016—PatientsLikeMe announced today it has appointed Marni Hall, PhD, MPH, as its new Senior Vice President of Research and Policy. A distinguished research scientist and public policy expert, Hall will develop and direct the strategies and teams focused on expanding the role of real-world evidence in precision medicine, and in the research agendas of PatientsLikeMe and its customers. Hall joins the company from the U.S. Food and Drug Administration (FDA) where she was most recently Director of Regulatory Science within the Office of Surveillance and Epidemiology (OSE) for the FDA’s Center for Drug Evaluation and Research (CDER). In this role, Hall became an expert at sourcing and analyzing big data sets, including adverse event reports, claims, -omics, and other data useful to risk assessment and risk management activities. She led data management and program operations, as well as research and development efforts to identify, evaluate, and implement new data, tools, and methods to support regulatory decision making. Specifically Hall’s team explored big data sources such as the FDA Adverse Event Reporting Systems (FAERS) and the Sentinel Initiative, and led post-market safety studies and programs …

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What’s your experience with accessing your electronic medical records?

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Hi everyone! I’m Sally Okun, Vice President for Advocacy, Policy and Patient Safety at PatientsLikeMe. Most of you probably already know me, but just in case you don’t, I really focus on bringing the patient voice to affect better treatment, services and care, and to be sure that the needs of patients are at the front of healthcare discussions. I’m also the link between PatientsLikeMe and government and regulatory agencies. And that’s what brings me to the blog today. The Government Accountability Office (GAO) is working on a new research study and they want to hear directly from patients like you about your experiences with your electronic medical records. Specifically the team at GAO is interested to learn about your experience accessing your health information electronically for viewing it yourself, downloading it to a computer or other device and/or sending it to someone else of your choosing. Find out more below about the GAO, this new research project and who to contact if you’d like to participate. The Government Accountability Office (GAO), an agency that evaluates federal programs for Congress, is conducting research to examine patients’ experiences with electronically viewing, downloading, or transmitting their health information, which will be incorporated into a …

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Your data doing good: IPF treatment experiences

Leave a Comment / Conditions, Idiopathic pulmonary fibrosis / By

Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good, because what you share helps researchers see what patients really need. During #24DaysofGiving, we’re highlighting some of the most important things we’ve learned from data that members like you have selflessly shared, and all the good your data donations are doing. Every year, the Food and Drug Administration (FDA) approves new medications that can help people living with life-changing conditions. But with new treatments come new questions. And that’s exactly what happened at the end of 2014 for people living with idiopathic pulmonary fibrosis (IPF). IPF is a rare condition that causes scarring in deep lung tissue over time and has no cause or cure, and before October 2014 no available treatment. That’s when two FDA-approved medications for the condition became available, simultaneously. They had the potential to make a difference in the lives of IPF patients, but how could they learn which medication might be right for them? If they started taking one …

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Your data doing good: The Fitbit study

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When you share your health data, we all learn During #24DaysofGiving this December, we’ll highlight some of the most important things we’ve learned from data that members have selflessly shared, and all the good data donation is doing. One example is the Fitbit study we partnered with Biogen on earlier this year. Nearly 250 members living with MS took part in the study, using Fitbit trackers to monitor their walking activity. What did we all learn? That combining the data members add to their PatientsLikeMe profiles with data collected by activity trackers can impact self-discovery and research. We’ve all seen the popularity of wearable devices (like activity trackers) soar in the last two years. They can keep track of the calories you eat, the steps you take, the sleep you get, and just about everything in between. They’re practical too: easy to use, progressively cheaper to buy, and so low-key that you almost forget they’re there. As PatientsLikeMe is watching the world of devices evolve, we’ve actually been thinking about its potential impact in a different way, and on a totally different level. These devices make it easier to monitor what’s going on for patients in the real world and …

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A patient’s perspective: member Gary reports back from the FDA public meeting on Parkinson’s disease

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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 the event. Here’s what he had to say: Why did you want to be part of the FDA public meeting? On the day I was diagnosed, back in 2012, I spent a great deal of time reflecting on my life. I thought a lot about how Parkinson’s disease will impact me and my family in the future. On that day I made a commitment to myself that I was going to take control, to the best of my ability, on the course of the disease progression, and would do anything possible to find a cure. I was determined to educate myself as much as possible about the disease, put together the best possible health care team, learn all I could about treatments currently in research, and participate in clinical trials. Parkinson’s was a new challenge in my life and I intended to tackle it like …

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