Research

Registry Impact

Your Impact on Food Allergy Research

How can you make a difference by joining the FARE Patient Registry? When you share your unique food allergy insights and experiences with the Registry, you communicate your priorities and needs to scientists, healthcare providers and others in a position to improve the lives of the 32 million Americans with potentially life-threatening food allergies. Registry data provided by thousands of participants of all ages and backgrounds informs research and development to improve and innovate patient care, including speeding the search for new ways to diagnose, treat, and ultimately, cure food allergies.

These research study summaries highlight some of what we’ve learned so far from food allergy patients and caregivers participating in the FARE Patient Registry. 

Half of People With Food Allergies Report at Least One Allergic Reaction Per Year

Understanding Food Related Allergic Reactions Through a US National Patient Registry1

How often do people with food allergies react to their problem foods? How many reactions are caused by foods known by the food allergic individual to carry extra risk? A groundbreaking study published in September 2020 in JACI: In Practice uses data from the FARE Patient Registry to shed light on the circumstances that lead to food allergy reactions.

  • Five of ten Registry survey respondents (50.5%) report at least one allergic reaction per year

  • More than one-third of respondents (37.7%) report multiple reaction

  • Nearly 10 percent (9.9%) of respondents reported allergic reactions result from intentional exposure to known allergens

Cross-contact was the most common reason cited for unintentional allergen exposures in both groups of respondents, parent/guardian and adults. The most common reason parent/guardians reported that children intentionally eat a problem food is that they’ve never had a serious reaction before. In contrast, adults who knowingly eat a problem food most commonly decide to take the risk despite knowing the dangers.

These findings suggest that strict allergen avoidance guidelines are not being followed, point to the need for more education and support to help the food allergy community recognize and manage the risk of anaphylaxis. To learn more, click here

Spending More Time and More Money: The Costs of Label Reading and Free-From Foods

FARE’s Food Allergy Consumer Journey 2

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In three separate studies over a two-year period, food allergy consumers were surveyed and interviewed about their shopping habits and the challenges they face when accessing safe and affordable foods. The key takeaway across all three projects was consistent: a universal label is needed to replace variable and confusing precautionary language, expand safe consumer choices and make managing food allergies less expensive and time-consuming.

“Taking time to fully understand the food allergy consumer has shown us that there is a simple and cost-effective solution: if companies create a standardized labeling structure for the top nine allergens, those with food allergies will be able to confidently choose more safe food options for their families.” Ruchi Gupta, MD, MPH, FARE Medical Advisor for Public Health and Education, FARE Patient Registry Study Staff and Professor of Pediatrics at Northwestern University Feinberg School of Medicine and Ann & Robert H. Lurie Children's Hospital of Chicago. 

  • One in four Americans, or 85 million people, spend $19 billion annually on foods free from the top 9 allergens to avoid health consequences from food allergies or intolerances. 

  • More than half of food allergy consumers (53%) indicate current labels are problematic and interfere with their daily lives.

  • Nearly three-quarters of food allergy consumers (71%) spend on average 3-5 minutes reading the labels of every single food item they purchase, supporting the need for a universal user-friendly label.

To learn more, click here

Food Allergies and Mental Health: Shedding Light on a Heavy Burden 

Mental Health Treatment Experiences Among Patients with Food Allergy and Their Caregivers3 

A survey of FARE Patient Registry Participants found that 71% of patients experienced food allergy-related mental health concerns. Among those surveyed who reported mental health concerns, the most common concerns were anxiety about living with food allergy (64%) and anxiety after an allergic reaction (55%).

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“Common apprehensions include intrusive thoughts about food allergy such as ‘what if I am accidentally exposed to an allergen, what if I am not present when my child has an allergic reaction?’ Physical sensations of anxiety such as increased heart rate, changes in breathing and panic attacks and changes to behavior to reduce anxiety or fear, such as avoiding safe foods and avoiding social situations that may involve food.” Says Linda Herbert, PhD, Licensed Psychologist, FARE Patient Registry researcher, Children’s National Health System, Washington DC

To learn more, click here

How Reporting About Reactions in Restaurants Can Lead to Change

Epidemiology of Food Allergic Reactions In Restaurants4

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Data reported by food allergy patients to the FARE Patient Registry reveals that, while a patient’s home is the most likely setting for an allergic reaction to food, a restaurant is the second most likely location. Dining out in restaurants accounted for 17.3% of the reactions reported to the Registry between September 2017 and September 2018.

Findings from FARE Patient Registry data strengthen the work of advocates to promote allergen labeling on menus and mandatory training for restaurant staff. In addition, by helping to define best practices for dining out, this research can improve safety and quality of life for food allergy patients and their families.

To learn more, click here

Oral Immunotherapy: Well-Known Among Registry Participants, Less Known in Broader Food Allergy Community

Awareness of Oral Immunotherapy (OIT) Among a Nationally Representative Sample of Food Allergy Patients/Caregivers Is Critically Lacking5

A FARE-led team surveyed Registry participants plus a national sample of food allergy patients and families to understand awareness of, and experience with, oral immunotherapy (OIT). While the majority of Registry participants were quite familiar with OIT, the opposite was true for the broader food allergy community. Key learnings from this study will help FARE and allergists develop programs to better educate the food allergy community on emerging food allergy treatments.  

To learn more, click here.


Source:

1Fierstein, J. L., Brown, D., Gupta, R., & Bilaver, L. (2020). Understanding Food-Related Allergic Reactions Through a US National Patient Registry. The Journal of Allergy and Clinical Immunology: In Practice. https://doi.org/10.1016/j.jaip.2020.08.011

2Food Allergy Research and Education, McKinsey & Company, Northwestern University, & Global Strategy Group. The Food Allergy Consumer Journey. [Press release]. Retrieved from https://www.foodallergy.org/food-allergy-consumer-journey

3Mental Health Treatment Experiences Among Patients with Food allergy and Their Caregivers, October 2019, Linda Herbert,P PhD, Luis Garcia, Mary Jane Marchisotto, and Brian Vickery MD, FARE Patient Registry, December 2018-June 2019, N=620 

4Oriel, R., Sharma, H., Garcia, L., & Wang, J. (2020). Epidemiology Of Food Allergic Reactions In Restaurants. [Abstract]. Journal of Allergy and Clinical Immunology, 145(2). https://doi.org/10.1016/j.jaci.2019.12.183

5Roach, A., Warren, C., Hong, N., Gupta, R., & Casale, T. (2020). Awareness of Oral Immunotherapy (OIT) among a Nationally-Representative Sample of Food Allergy Patients/Caregivers is Critically Lacking. The Journal of Allergy and Clinical Immunology, 145(2). doi: https://doi.org/10.1016/j.jaci.2019.12.092