clinical trials

PatientsLikeMe and CISCRP Team Up with Sanofi to Spotlight Medical Heros and Clinical Trial Participation

CAMBRIDGE, Mass.— May 13, 2013—PatientsLikeMe and the nonprofit Center for Information and Study on Clinical Research Participation (CISCRP) announce a new partnership with global healthcare leader Sanofi (NYSE: SNY) to raise awareness about the benefits of participating in clinical trials. The partnership will focus on: spotlighting “Medical Heroes” (those who “give the gift of their participation in clinical trials” to advance medical knowledge); increasing patient awareness about clinical trial opportunities; and advancing PatientsLikeMe’s mission to accelerate research by analyzing patients’ real-world disease experiences. The partnership will utilize the PatientsLikeMe’s Clinical Trial Awareness tool to match patients with relevant Sanofi clinical trials and CISCRP’s educational materials to inform patients and their support network about the clinical research process. Through the tool, patients can search for and be notified about trials based on age, sex, disease or condition, and location criteria. As part of this collaboration, the clinical trial tool on PatientsLikeMe will become part of Sanofi’s clinical trial recruitment process for a range of conditions, including asthma, cardiovascular disease, diabetes and oncology. Additionally, the partners will work together to raise awareness among doctors of the benefits of clinical trials for their patients. This collaboration adds to CISCRP’s expansive outreach and education …

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PatientsLikeMe Unveils New Tool to Match Patients with Clinical Trials Worldwide

Launch at European NHS Healthcare Innovation Expo Comes as PatientsLikeMe Chairman Calls for Revolution in Disease Measurement CAMBRIDGE, Mass. — Mar 13, 2013 — The U.S.-based patient network and real-time research platform PatientsLikeMe unveils its global clinical trials tool today at Europe’s Healthcare Innovation Expo 2013, hosted by the National Health Service (NHS). The free tool, unveiled today by Research Director Paul Wicks Ph.D., draws on open data to match patients from around the globe with clinical trials based on their condition and location. The U.S. prototype was launched last year and has already helped thousands of patients find suitable clinical trials.  The tool is available at http://www.patientslikeme.com/clinical_trials. “Open data helps us accelerate the pace of research, and it’s crucial we do everything possible to match patients to trials that might advance treatment and help them live better with their condition,” says Wicks, a newly named TED Fellow and UK scientist. “We’re excited to be at this year’s Expo to learn what British and European healthcare innovation has in store for the NHS.” Last week, PatientsLikeMe Co-founder and Chairman Jamie Heywood spoke about innovative solutions to healthcare at the 2013 Nuffield Trust Health Policy Summit in London. Nuffield Trust is an independent source of evidence-based research and …

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Taking Psoriasis Treatment to the Next Level: An Interview with Dermatologist Dr. Jerry Bagel

A nationally recognized psoriasis expert, Dr. Jerry Bagel, MD, has been an investigator on more than 45 clinical trials seeking new treatments for psoriasis and other skin conditions.  In addition to treating patients at his private dermatology practice in East Windsor, New Jersey, Dr. Bagel serves as Senior Attending Physician at the Princeton University Medical Center and Director of the Psoriasis Treatment Center of Central New Jersey.   He is also a three-term member of the National Psoriasis Foundation’s Medical Advisory Board.  What investigational treatment for psoriasis is he currently studying?  And what does he wish more psoriasis patients knew?  Check out our insightful interview below. 1. What led you to focus your research on psoriasis? I started studying psoriasis when I was resident at Columbia-Presbyterian in 1982-1985. At that time I would spend six months on in-patient service with 30 hospitalized psoriatic patients who would stay in for treatment for a month.   And I realized the burden of disease – the psychological, emotional and physical impact of this disease on people. So when I opened up my private practice in 1985, I decided that psoriasis treatment and care of psoriasis patients would be a major part of my professional career and so I …

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Recognizing the Rare Disease Community’s Champions of Hope

Did you know that 1 in 10 people worldwide have rare and genetic conditions? PatientsLikeMe was a proud sponsor of the 1st Annual Tribute to Champions of Hope, organized by our partner the Global Genes / RARE Project. Held on September 27th in Newport Beach, CA, the gala recognized outstanding individuals who are working to affect change in the rare and genetic disease community.  All proceeds from the event – which attracted celebrities, medical researchers, pharmaceutical executives and even Olympic champions – go to benefit programs for patients and advocates. In attendance from PatientsLikeMe were Ben Heywood, Arianne Graham and Deborah Volpe, who got to hear inspirational stories of the work these champions of hope are doing.  Highlights included the Biotechnology Award given to Charles Dunlop of Ambry Genetics and the Mauli Ola Foundation, which organizes therapeutic surf experiences for kids with cystic fibrosis, and a preview of the documentary Here. Us. Now., which chronicles a family with twin daughters diagnosed with Niemann-Pick Type C, a rare, incurable and fatal genetic disease.  Lifetime Achievement Award recipient Henri Termeer, the former President and CEO of Genyzme, aptly summed up all those who received awards as “people that have a sense that if …

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How Social Media Is Changing Research (Part II): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell

Today’s guest post is written by PatientsLikeMe member Jeri Burtchell (TickledPink), who has been living with multiple sclerosis (MS) for 13 years.  A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me:  My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.”  Her patient advocacy and social media presence led to her being invited to speak the Disruptive Innovations conference taking place in Boston this week. Read Part I of Jeri’s guest post first! Because blogging a clinical trial from start to finish was unheard of, I attracted the interest of not only patients, but those in charge of clinical trials. They are interested in the impact of social media on clinical trials, and how they can utilize it to their benefit. Sites such as personal blogs, Facebook, Twitter, and PatientsLikeMe are here to stay and people naturally want to share information. I got a direct message on Twitter from Craig Lipset, who is Head of Clinical Innovation, Worldwide Research & Development for Pfizer. Social media brought us together to have a conversation about research that never could have taken place before the Internet. Everyone is more connected and approachable now. Naturally, …

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How Social Media Is Changing Research (Part I): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell

Today’s guest post is written by PatientsLikeMe member Jeri Burtchell (TickledPink), who has been living with multiple sclerosis (MS) for 13 years.  A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me:  My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.”  Her patient advocacy and social media presence led to her being invited to speak the Disruptive Innovations conference taking place in Boston this week. One rainy day in April 2007, I was lying in bed, staring at the ceiling, talking myself out of suicide. I was having another MS relapse. This time it was attacking the part of my brain responsible for controlling emotion. As a result I was having panic attacks almost daily. Along with the emotional issues, I was also having trouble walking and horrible spasticity. I had been diagnosed with MS for eight years at that point and, although I was on one of the FDA approved treatments, I was continuing to relapse three to four times a year. It felt like standing in the ocean; every time I would stand up and catch my breath, another “wave” of MS knocked me back down. …

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Why Should I Participate in a Clinical Trial?

“Before me, there were hundreds and thousands of other people with Parkinson’s who participated in clinical trials that gave me the ability to have the medications that I take today. If people today do not participate in clinical trials, there will be no cure. There will be no new medications.” – Parkinson’s patient Jean Last year, PatientsLikeMe unveiled our Clinical Trials search tool, which helps you find upcoming studies that might be right for you.  We also introduced a matching feature that notifies you on your profile when you meet the criteria for a new study.  That means when your condition, gender, age and location are all a match. But if you’re unfamiliar with the clinical trial process, the idea of participating in a study may be a bit daunting.  That’s why the National Institutes of Health (NIH) recently launched a new microsite called NIH Clinical Research Trials and You.  Here you’ll find a clear overview of how clinical trials work as well as a number of personal stories from both study volunteers as well as researchers. Below are two volunteers’ stories to give you a sense of the different reasons people have for participating in research. Jenny (Type 1 …

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A Day in the Life of Biz Dev Team Member Arianne Graham

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features employees from different departments.  So far, we’ve interviewed User Experience Engineer Cris Necochea, Research Assistant Shivani Bhargava, Office Manager Alison Dutton and Research Scientist Timothy Vaughan. Today we hear from Arianne Graham, a Harvard MBA graduate who joined the business development team in 2010.  What current project is she most excited about?  And how is working at PatientsLikeMe different than her previous healthcare jobs?  Find out that and more in our interview. 1.  What’s it like to be part of the business development team? When spending time with friends and family or even meeting new people, I’m always excited to answer that small talk question: “What do you do?” I happen to think I have the best job ever. As part of the business development team here at PatientsLikeMe, my colleagues and I work with everyone who cares about patients (including providers, researchers, pharmaceutical companies, insurance companies, pharmacies, and many more!). We look at how the real-world data shared by our members can transform their businesses for the benefit of patients everywhere. Sounds like fun, right? …

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The “Immense Benefits” of Online Health Reporting: An Interview with ALS Study Author Dr. Thomas Meyer

Earlier this month, we told you about a new study showing that ALS patients reporting their health status over the Internet (using a rating scale known as the ALSFRS-R) is just as reliable as a trained nurse rating the patient’s score.   Now, we’d like to share our interview with lead study author Dr. Thomas Meyer, a neurologist at Charité University Hospital in Berlin, Germany.  What role did PatientsLikeMe play in this research?  And what are the study’s implications for the future of clinical trials?  Find out that and more in our interview with Dr. Meyer below. 1.  When did you become interested in patient-reported outcomes? In 2005, we first used tablet PCs in our outpatient department to capture patient-reported outcomes (PROs). To us neurologists, PROs play a crucial role. Many neurological conditions can be captured by means of PROs only – I am thinking of pain in neuropathies, spasticity in multiple sclerosis (MS), the subjective perception of movement ability in Parkinson’s syndrome and dyspnoea (breathing difficulty) in neuromuscular conditions, including ALS. Given this fact, we neurologists have always listened to our patients a little more carefully so that we can do a good job. Therefore, the systematic capturing of PROs …

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Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy

You may remember our interview with ALS advocate Debra Quinn from last fall.  Today, we’d like to introduce you to another ALS patient activist in our midst:  Tom Murphy, a PatientsLikeMe member since January 2011.  As part of the ALS Treat Us Now nonprofit group, Tom and several other ALS patients around the country have launched a petition on Change.org that’s gaining steam.  Their goal?  20,000 signatures. Addressed to “corporate citizens, FDA executives and neurologists,” the petition asks that “compassionate use” drugs be made available to ALS patients now.  What this means is that Tom and the Treat Us Now group want promising Phase II drugs showing safety and efficacy to be made available to ALS patients prior to FDA approval.  The reason is simple. ALS patients, who face an average life expectancy of two to five years following diagnosis, don’t have time to wait. Check out our interview with Tom to learn how he became part of ALS Treat Us Now and what two experimental drugs his group is focused on in particular. 1.  How did you get involved in the “Treat Us Now” movement? The ALS community seems to be a very close-knit group of people who readily …

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