Food allergy patient registry informs groundbreaking research, with patient-reported data on numbers and reasons for reactions
MCLEAN, Va. September 21, 2020 – Today, FARE (Food Allergy Research & Education), the world’s leading non-governmental organization engaged in food allergy advocacy and the largest private funder of food allergy research, together with the Center for Food Allergy & Asthma Research (CFAAR) at Northwestern University Feinberg School of Medicine and Ann & Robert H. Lurie Children’s Hospital of Chicago, published a new study in The Journal of Allergy and Clinical Immunology: In Practice (JACI: In Practice), “Understanding Food Related Allergic Reactions through a US National Patient Registry.”
The study explores the frequency of food-related reactions and the motivation for intentional exposure to a known food allergen and found that more than 50 percent of those with food allergies report having at least one food-related allergic reaction per year. The primary data source for this study was FARE’s Patient Registry, a national online repository of data collected from participants with food allergy.
“With half of the people with food allergies reporting one allergic reaction a year and over a third reporting multiple reactions, we need to better understand the causes to help with prevention,” said study co-author Dr. Ruchi Gupta, director of CFAAR, professor of pediatrics at Northwestern Feinberg School of Medicine, and physician at Lurie Children’s. “Very little data exists on the frequency and context of food-related allergic reactions and this study shows us that more research is needed.”
Of the 3,054 respondents who completed the most recent reaction survey, 9.9 percent of food allergen exposures were classified as intentional, 82.1 percent as unintentional, and 4.8 percent as medically related (oral challenges and/or oral immunotherapy). The most common reason for unintentional exposure was cross-contact with an allergen, with 24.1 percent of children and 32.2 percent of adults citing cross-contact as the main reason for exposure.
While most food-related reactions are caused by unintentional exposure to an allergen, 1 in 10 reactions are due to intentional exposure to food allergens, according to the new study.
“We were surprised to find that 10 percent of reported food allergen exposures were intentional,” stated study lead author, Jamie L. Fierstein, Ph.D., Senior Research Data Analyst at CFAAR. “We need further research on these types of exposure behaviors in both children and adults so that we can develop strategies on how to introduce foods safely if an individual feels like they may no longer be allergic.”
The most common reason for pediatric intentional exposure was the child never had a serious reaction before. For adults, the common motivation was the decision to take the risk, despite knowing the dangers. These results are contrary to current food allergy guidelines, which suggest strict avoidance of allergens. The risky behavior taken by caregivers and adults with intentional allergen exposure indicates the need for more education and support for understanding and managing the risk of anaphylaxis.
“There is so much more to learn about food-related allergic reactions, but these findings are an exciting and important start to answering questions we have been asking for years,” said Dr. Thomas B. Casale, Distinguished Chairman of the FARE Clinical Network and Principal Investigator, FARE Patient Registry. “FARE and the FARE Patient Registry are dedicated to supporting this effort by connecting the individuals and families living with food allergy with the research community that is committed to solving the food allergy epidemic.”
The FARE Patient Registry was launched in May 2017 and reflects the combined efforts of FARE's team of leading medical authorities on food allergy science, as well as researchers and doctors from around the nation. This is the first paper to utilize the registry’s valuable data and showcases the need for more data and the strength in collaboration between leading food allergy research institutions, clinicians, and others seeking to deepen their understanding of the everyday burden caused by food allergy, improve patient care and education, and lead the way for the discovery of better treatments and a cure.
To learn more about the FARE Patient Registry, please visit: https://www.foodallergypatientregistry.org/.
FARE (Food Allergy Research & Education) is the world’s leading non-governmental organization engaged in food allergy advocacy and the largest private funder of food allergy research. Our 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. FARE is transforming the future of food allergy through innovative initiatives that will lead to increased awareness, new and improved treatments and prevention strategies, effective policies and legislation and novel approaches to managing the disease. To learn more and to register for FARE’s upcoming virtual events, including the 2020 Contains: Courage® Research Retreat and the 2020 Living Teal™ Global Summit, please visit www.foodallergy.org.
About the Center for Food Allergy and Asthma Research (CFAAR)
The Center for Food Allergy and Asthma Research (CFAAR), part of the Institute for Public Health and Medicine (IPHAM) at Northwestern University Feinberg School of Medicine and Ann & Robert H. Lurie Children’s Hospital of Chicago, aims to find answers and shape policies surrounding food allergy, asthma and other allergic conditions.
Led by Ruchi Gupta MD, MPH, CFAAR conducts epidemiological, clinical, and community-based research to make meaningful improvements in the health of children, adults, and families living with allergic disease. The team is internationally recognized for their research surrounding the prevalence of childhood and adult food allergy in the United States and have contributed significantly to academic research understanding the economic cost of food allergy and asthma. A core mission of CFAAR is to reduce the burden of disease and improve health equity by developing, evaluating and disseminating asthma and allergy interventions, as well as by conducting work to inform local, state, national and international health policy. To learn more about their center, please visit www.cfaar.northwestern.edu
About Lurie Children’s
Research at Ann & Robert H. Lurie Children’s Hospital of Chicago is conducted through the Stanley Manne Children’s Research Institute. The Manne Research Institute is focused on improving child health, transforming pediatric medicine and ensuring healthier futures through the relentless pursuit of knowledge. Lurie Children’s is ranked as one of the nation’s top children’s hospitals by U.S. News & World Report. It is the pediatric training ground for Northwestern University Feinberg School of Medicine. Last year, the hospital served more than 220,000 children from 48 states and 49 countries.
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