Patient-Based Research Aims to Produce New Insights Into Most Common Autoimmune Disease in U.S.

CAMBRIDGE, Mass. — Aug 13, 2012 — PatientsLikeMe announces it has entered into a collaboration with Merck, known as MSD outside the United States and Canada, to evaluate the impact of psoriasis on patients and to inform a novel approach to improving outcomes.

“A broader and more human view of psoriasis will help patients and their doctors understand the true nature of the disease,” says Ben Heywood, President and Co-founder of PatientsLikeMe. “We’re excited to collaborate with patients and Merck to uncover insights about the disease that may lead to better approaches for patients managing their condition day-to-day; providers creating care plans; and researchers developing treatments.”

According to the National Psoriasis Foundation, psoriasis is a non-contagious, chronic, autoimmune disease that appears on the skin and is associated with other serious health conditions including diabetes, heart disease and depression. It is estimated to affect over 7.5 million people in the United States.

“Effective use of health information provides the path forward to patient-centered care and personalized medicine,” said Dr. Sachin H. Jain, Chief Medical Information and Innovation Officer, Merck. “Our collaboration with PatientsLikeMe is an important part of Merck’s strategy to establish and apply innovative solutions that improve disease management and enhance the patient experience.”

Under the agreement, PatientsLikeMe will work directly with Merck’s clinical researchers and epidemiologists to analyze and interpret psoriasis patient-reported data.

PatientsLikeMe has an active community of psoriasis patients, where nearly 2,000 people share data and stories to reveal what it’s like to have the disease and what they do to treat it. Health profiles, forum postings and journal entries highlight their experiences, and a new survey reveals how the summer season affects them physically and emotionally. Go to http://plmjoin.com/psoriasis to learn more.

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on Twitter.com/PatientsLikeMe and http://blog.patientslikeme.com.]

Did you know that psoriasis cannot be transmitted through skin-to-skin contact – or any other type of interaction?

August is Psoriasis Awareness Month, an annual event dedicated to highlighting the life-altering impact of psoriasis and dispelling the many myths surrounding it.  Beyond the misperception that it may be contagious, another major misunderstanding is that psoriasis is “just a skin condition.”  In fact, up 30% of people with this serious autoimmune disease will develop psoriatic arthritis, which can cause chronic pain and swelling in the joints.

Throughout 2012, PatientsLikeMe has been interviewing members who are blogging about life with psoriasis in order to shed light on this highly visible and often stigmatized disease, which affects as many as 7.5 million Americans and is the most common autoimmune condition in the US.  How have they managed both the physical and emotional challenges?  Check out our inspiring interviews with:

• Lissa of “Psoriasis Girl’s Point of View”
• Alisha of “Being Me in My Own Skin”
• Jessica of “Jessica and Psoriasis”
• Joni of “Just a Girl with Spots”

These four brave ladies are just the tip of the iceberg, however.  1,820 patients are sharing their experiences with psoriasis at PatientsLikeMe, while 730 patients are sharing about their psoriatic arthritis as well.  Get to know our growing psoriasis community and stay tuned for more psoriasis coverage – including the results of our new psoriasis patient survey and a recap of our exhibition at the American Academy of Dermatology Summer Meeting.

Gluten-free products are now readily available in many grocery stories – and for good reason. One in 133 Americans has celiac disease, an autoimmune digestive disease that damages the villi of the small intestine and interferes with the absorption of nutrients from food. As a result, people with celiac disease cannot tolerate gluten, a protein that is found in wheat, rye and barley products.

On September 13^th, the United States recognizes Celiac Awareness Day as a result of a resolution passed by the Senate. The date has special meaning as it’s the birthday of Dr. Samuel Gee, the British pediatrician who offered the first full clinical picture of celiac disease in 1888 and also theorized that a special diet may help. Thanks to his research as well as ensuing medical advances, it is now possible to be tested for celiac disease antibodies and undergo further diagnostics, including a genetic test and/or biopsy. There are also numerous products, recipes and resources to support those on a gluten-free diet.

The problem, however, is that many people go undiagnosed. According to the National Foundation for Celiac Awareness (NFCA), which sponsors their own awareness month in May, 95% of celiac patients are undiagnosed or misdiagnosed. That means that up to three million Americans are suffering from the symptoms of celiac disease – which can include bloating, abdominal pain, diarrhea, nausea, migraines, rashes and joint pain – without knowing why. See this helpful checklist for a full list of symptoms as well as other conditions commonly linked with the disease. For example, a recent study found that celiac disease prevalence was 5-10 times higher in those with multiple sclerosis.

Think you or a family member might have celiac disease? Wish you could discuss it with someone who can relate? You can! Here at PatientsLikeMe, 115 members report celiac disease. Explore their profiles and get to know a patient with celiac disease.

The most common autoimmune disease in the US, psoriasis affects as many as 7.5 million Americans. Yet many people think it’s just “a skin thing.” To help debunk this misunderstanding and show all the ways psoriasis impacts one’s life, the National Psoriasis Foundation is holding the first-ever film festival for psoriasis and psoriatic arthritis, a painful joint condition that up to 30 percent of people with psoriasis develop.

The Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival invites you to show what life is really like with psoriatic disease, including all the ups and downs, frustrations and realizations. Not sure how to get started? You may want to think of a genre for presenting your story first. The festival invites submissions in seven different categories: action, youth, animation, horror, comedy, documentary and music video.

All videos submissions are due on August 28, 2011. Two semi-finalists will be chosen in each category for online voting by the public, beginning on August 30, 2011. Anyone with any condition can watch the videos and vote on their favorites. Then on September 6, 2011, the video with the most online votes across all seven categories will be named the Festival Grand Prize winner and take home a $500 Visa gift card.

For festival FAQs, rules and regulations, and to submit your video, visit www.psoriasis.org/pam.