November 2019

November 5, 2019

From the Chief Scientific Officer (CSO), Marie Robert, MD

One of our most important roles at Beyond Celiac is making sure doctors, researchers, pharmaceutical companies, and other key stakeholders listen to patients and understand the needs of the celiac disease community. At our May 2019 Research Symposium, Linda Deal, MS, of Pfizer discussed the importance of including patients as research partners. Patient engagement in the drug development process ensures any treatment in the drug development pipeline will meet the needs of people with celiac disease. It also leads to clinical trials that measure outcomes important to patients.

At our upcoming Research Summit, we invited people with celiac disease to speak directly to doctors, researchers, nutritionists, pharmaceutical companies, insurance companies, and the FDA. Our Summit, titled Getting Over the Peak: The Final Ascent to Realizing Therapies in Celiac Disease, will discuss the remaining barriers to bringing a celiac disease treatment to market and how we can work together with all stakeholders to overcome these barriers. On the heels of new study results from Cour, and one potential treatment in the furthest-ever stage of drug development, this is a very timely topic.

On the morning of November 15, we will be live webcasting two vibrant patient panel discussions at the Summit. In the first panel, we will hear from people with celiac disease and from parents of children with celiac disease. Moderated by Anne Lee, EdD, RDN, LD, the panelists will discuss their celiac disease experiences, including how they navigate the gluten-free diet, how they eat out, and how their lives have changed since they or their children were diagnosed.

The second patient panel will feature people who have participated in celiac disease clinical trials. Our four panelists will discuss how they learned about the clinical trial, what their participation entailed, and if they would participate again. We’ve heard before from researchers about the need for patient participation to make clinical trials successful. If you’ve ever wondered what it would be like to be part of a clinical trial, you’ll definitely want to tune in.

In between the two panels Joseph Murray, MD, of the Mayo Clinic and international celiac disease expert will discuss the current status of celiac disease drug development, including an overview of the barriers to progress.

You can sign up for the webcast here.  If you sign up, you will receive a link that will let you watch live or watch the recording afterward.

The Summit will also feature discussions of the often-ignored question of how and when to include children in clinical trials and the role that patient advocacy groups play in advancing research internationally.

Other highlights will include representatives from the Food and Drug Administration discussing the role of the patient voice in drug development. We will also hear from pharmaceutical companies that have potential treatments in the drug development pipeline. The Summit will be interactive, with lots of time for questions and comments from the entire in-person audience, further making sure the celiac disease community members in attendance have a chance to have their views heard.

Our goal is to leave the Summit with specific immediate, short term and long term actions that the entire celiac disease community will tackle, both individually and together to overcome the remaining barriers to bringing a treatment beyond the gluten-free diet to the celiac disease community. A detailed report of the meeting, explicitly stating both the barriers to therapies and the strategies to overcome those barriers will be posted on our website.

Thank you to our Summit Gold Sponsor, Takeda.

 

 

 

Apple and Craisin Bread Pudding

A warm, autumn-themed dessert to keep you feeling cozy as the nights start to turn cold!

 

 

 

About Chef Oonagh Williams

Is Sharing a Toaster Safe?

Researchers from the Celiac Disease Program at Children’s National Health System and the Harvard Celiac Disease Program had celiac disease patients like these in mind when they did a recent study that investigated whether a separate toaster and other kitchen items are needed.

Nanoparticles Show Promise as Treatment

A potential treatment for celiac disease in which nanoparticles act like a Trojan horse and carry a hidden component of gluten to reprogram the immune system not to react has shown positive early results in a new clinical trial.

 



News, Events & Updates

Beyond Celiac Research Summit

On November 15, Beyond Celiac is holding our 2nd research summit. The event, Getting over the Peak: The Final Ascent to Realizing Therapies in Celiac Disease, will bring together scientists, patients, FDA reps and more! In addition, Joseph A. Murray, MD of Mayo Clinic and leading researcher in the field of celiac disease, will
discuss the roadblocks to research, including a clinical trial update. Register for the free webcast.

Thank you to our Summit Gold Sponsor, Takeda.

Simply Asia Withdrawing Three Products from Store Shelves

Three flavors of Simply Asia Street Noodles that have the Beyond Celiac gluten-free trademark are being voluntarily withdrawn from the market by the manufacturer because they contain an ingredient not allowed under the trademark rules.

 

 

Beyond Celiac Supports the Safe Step Act

On Wednesday, November 13th, 2019 the Digestive Disease National Coalition (DDNC) will coordinate a National Day of Advocacy to encourage federal legislators to address step therapy reform by supporting the Safe Step Act.

 

 

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