Research

Genomics & Medicine: Your Questions Answered!

Recently, PatientsLikeMe’s Associate Director of Community Management, Brad Hornback, sat down with Dr. Eric Topol (Founder & Director at Scripps Research Translational Institute) and Christine Von Raesefeld (Patient Advocate) to discuss the topic of genomics and medicine, including how genomic data can affect the healthcare journey and how individuals may receive their own DNA results …

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

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 …

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

“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 …

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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

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 …

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

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

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 …

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PatientsLikeMe Launches Virtual Trial for ALS Patients

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 …

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PatientsLikeMe Names Marni Hall Senior Vice President

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 …

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

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 …

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Your data doing good: IPF treatment experiences

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 …

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