Food Allergy Research & Education Receives PCORI Award to Develop Patient-Centric Food Allergy Research Program
FARE to Convene Multi-disciplinary Outcomes Research Advisory Board to Increase Effectiveness and Patient-Centered Nature of Food Allergy Research Agenda
McLEAN, Va. (May 10, 2016) – Dedicated to bringing the voice of the food allergy community into the national food allergy research agenda, Food Allergy Research & Education (FARE) is proud to announce it has received a Eugene Washington Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI).
FARE’s two-year project, “Empowering Patient Partners and Key Stakeholders to Develop a Patient-Centric Food Allergy Research Program,” seeks to address an unmet need in the research field by developing a partnership of patients empowered to work with other key stakeholders. By forming the new Outcomes Research Advisory Board, which will include four regional boards, FARE will bring together a wide range of perspectives and experiences, at a critical point in food allergy research. As the world’s largest private source of funding for food allergy research and the leading patient advocacy organization dedicated to food allergy, FARE is uniquely suited to carry out this important work.
“With two new therapies in Phase 3 clinical trials, this is an exciting time in the field of food allergy research,” said James R. Baker, Jr., CEO and chief medical officer of FARE. “As research progresses, it is crucial that the perspectives, preferences and needs of the patient are prioritized. We believe that disparities in food allergy diagnosis and care and the complexities of potential treatments will be addressed more effectively when a diverse group of patients working with clinicians and key stakeholders informs the food allergy research agenda. This PCORI award enables FARE to deepen patient engagement as it relates to research.”
The application period to become a member of FARE’s Outcomes Research Advisory Board will open today and run for approximately six weeks. Four regional boards will be constituted and will include patients, researchers and other stakeholders such as school nurses, educators, advocates and representatives of health plans and pharmacy benefit managers. Patient representatives – parents of children with food allergies or adults with food allergies -- will provide their unique perspectives into research topics while they and other stakeholders will provide insights on a range of additional topics. Clinicians and/or researchers from the FARE Clinical Network, a collaborative of 24 clinical care and research facilities, also will serve on the Outcomes Research Advisory Board.
“It is important to understand the patient’s perspective on the pipeline of potential therapies, the potential benefits and risks that matter most to them, and their willingness to participate in clinical trials,” Baker said. “We believe that unique collaboration between the Outcomes Research Advisory Board and the FARE Clinical Network will ensure that future research and innovative therapies are more patient-centric.”
The board will be tasked with informing and helping to develop a patient-centered research agenda related to food allergy diagnosis, management strategies, therapeutic options and disparities in care among some minority populations. It is expected that the Outcomes Research Advisory Board will influence the process of selecting and prioritizing research and selecting potential clinical trial designs and endpoints.
“This FARE project was selected for Engagement Award funding not only for its commitment to engaging patients and other stakeholders, but also for its potential to increase the usefulness and trustworthiness of the information we produce and facilitate its dissemination and uptake,” said Jean Slutsky, PCORI’s Chief Engagement and Dissemination Officer. "We look forward to following the project’s progress and working with FARE to share the results."
PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.
For more information about fthis program, visit www.foodallergy.org/research/outcomes-research.
Food Allergy Research & Education (FARE) works on behalf of the 15 million Americans with food allergies, including all those at risk for life-threatening anaphylaxis. This potentially deadly disease affects 1 in every 13 children in the U.S. – or roughly two in every classroom. FARE’s mission is to improve the quality of life and the health of individuals with food allergies, and to provide them hope through the promise of new treatments. Our work is organized around three core tenets: LIFE – support the ability of individuals with food allergies to live safe, productive lives with the respect of others through our education and advocacy initiatives; HEALTH – enhance the healthcare access of individuals with food allergies to state-of-the-art diagnosis and treatment; and HOPE – encourage and fund research in both industry and academia that promises new therapies to improve the allergic condition. For more information, please visit www.foodallergy.org and find us on Twitter@FoodAllergy, Facebook, YouTube and Pinterest.