Beyond Celiac CEO Alice Bast to Present Real-World Patient Engagement Strategies at ISPOR 2016

May 24, 2016

Beyond Celiac CEO Alice Bast to Present Real-World Patient Engagement Strategies at ISPOR 2016


PHILADELPHIA, May 24, 2016 /PRNewswire/ — Beyond Celiac announced today that Alice Bast, Chief Executive Officer, was selected to share her experience in creating innovative patient engagement strategies at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) 21st Annual International Meeting starting this week, May 21-25, 2016 in Washington, DC. The panel discussion, entitled, “Patients as Partners in the Development and Interpretation of Clinical Outcome Assessments: Methods, Challenges and Benefits,” will feature strategies for successfully engaging patients in research to improve treatment options for disease management and a potential cure.

Bast will share the Beyond Celiac experiences and learnings from the organization’s 2015 Research Summit, an innovative meeting that helped to design the organization’s long-term, patient-centered research agenda. Notably, Bast will discuss the organization’s unique approach to stakeholder engagement, which brought together patients and caregivers with clinicians, scientists, the diagnostics and biopharmaceutical industries and a federal research agency. As a result of including patients at the decision-making table, the organization and its scientific advisors were able to identify the most significant unmet needs in the field of celiac disease.

The Beyond Celiac Research Summit, the culmination of a three-part gap analysis which included primary data collection methods, uncovered that existing tools and measures to assess patient reported outcomes and resource utilization are not satisfactory indicators of the true cost and efficiency of healthcare provision. This leading disparity has hindered progress in the field of celiac disease. These challenges include:

  • The inability to quantify the burden of both disease and treatment
  • No outcome measures have been accepted by the FDA
  • The exacerbation of the myth that the gluten-free diet is a “cure”
  • An underestimated market for new treatment options

“Involving patients and their families in our research methods directly impacted our ability to identify a major challenge in the field of celiac disease,” said Bast, who suffered from the debilitating symptoms of celiac disease for nearly a decade before her diagnosis in 1994. “Research data collection tools must be meaningful to patients in order to capture the high-quality data required to successfully demonstrate the severity of all disease, including celiac disease.”

The Summit proved to be instrumental in relationship-building across industry as well. For example, Takeda Pharmaceutical Company Limited and Cour Pharmaceutical Development Company, Inc., both of whom had representatives at the Summit, have since begun partnering on the potential development of celiac disease therapies.

The ISPOR panel, to be held Wednesday, May 25 in Washington DC, will explore methods and challenges associated with:

  • Patient engagement on collaborative projects that include industry, patient advocacy groups, and academia
  • The current FDA initiative for obtaining patients’ perspectives on disease experience and treatment and plans
  • Sponsor organizations’ strategies to facilitate patient engagement as research advisors in contrast with seeking their input in standard endpoint development research

In addition to Bast, the panel will include Milena Anatchkova, PhD , Research Scientist, Outcomes Research, Evidera; Theresa M. Mullin, PhD , Director, Office of Strategic Programs, FDA Center for Drug Evaluation and Research; and Linda S. Deal, MSc , Senior Director & Head of Patient-Centered Outcomes Measurement, Pfizer.

About Beyond Celiac
Beyond Celiac, formerly known as the National Foundation for Celiac Awareness, is a leading advocacy organization committed to improving awareness and understanding of celiac disease as a serious genetic autoimmune disease; accelerating innovation to support those with celiac disease to live life to the fullest; and forging pathways to a cure. We aim to inspire hope, build a strong community and serve as a trusted resource on celiac disease. For more information, please visit


Media Contacts:
Claire Baker
Beyond Celiac
[email protected]

Will Hall
WE Communications
[email protected]



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