Diversity a Key Component to a Comprehensive Food Allergy Registry

Data from the FARE Patient Registry helps researchers learn more about the natural history of food allergy.

limjr [at] chop.edu (By Jillian Rose Lim)

From outgrowing an allergy to the frequency of reactions, patients and families are putting the knowledge gained through their unique food allergy experiences to work for others. Over the last four years, more than 13,000 participants across the nation have contributed their valuable insights and stories to the Food Allergy Research and Education (FARE) Patient Registry, a tool helping researchers develop a better natural history for food allergy.

Now, clinicians in the Food Allergy Center at CHOP hope to expand the registry by encouraging individuals from ethnically diverse backgrounds to participate. Though the hospital’s involvement with FARE is not new - CHOP has been a designated Center of Excellence and data coordinating center previously - for Michael Pratt, a clinical research assistant in the Food Allergy Center, and Center Co-director Jonathan Spergel, MD, PhD, this diversification of the registry is an important initiative for optimizing both scientific study and patient experience.

"We do a lot of advanced research at CHOP, but in a lot of ways, we’re still trying to nail the basics of food allergy: when it comes up, when people outgrow it, how many reactions you have," Pratt said. "This kind of national-level data truly helps everybody involved with food allergies. It provides a resource for patients - a way to express the challenges they face with allergies. Of course, it also supports research. And then because allergic diseases surface so differently based on any number of environmental factors, it’s really important to have that diversity aspect there."

When participants join the registry, they answer a range of questions related to their allergy experience such as the type of allergen they have, when they received their diagnosis, the number of accidental exposures they’ve experienced, and much more. Participation is virtual and voluntary, with responses stored securely in FARE’s database. Furthermore, participants have the ability to compare their reported experiences with those of other members in the registry community, but all data is de-identified, meaning personal identities are protected.

Meanwhile, the participants’ responses serve as scientific data that helps scientists like Dr. Spergel conduct their research. For Dr. Spergel, who studies the bench-to-bedside aspects of both common and rare food allergies, the more diversity in the data, the better.

"There’s very little known about food allergies in the more ethnically diverse population," Dr. Spergel said. "I think this is a really unmet need, and by expanding into patients who are more ethnically diverse, we will be able to begin to answer those questions. I think we’ll have a much better understanding of how food allergies affect people because it affects some people a lot and some people very differently."

For example, researchers could use the data to take a deeper dive into the natural history of food allergies by providing more information on what happens at home rather than what patients present at the clinic.

"I don’t think we have a good understanding of how often people really have food reactions because even though we know how often people go to the emergency department, we don’t know how often they’re having reactions at home and what they are doing about it," Dr. Spergel said. "And I think that information will help us develop better public health measures at schools and things along that nature."

Pratt hopes data from the registry will help researchers shed light on the mental health aspect of having a food allergy.

"Though it’s not our own research at CHOP, there is a survey within the registry about quality of life and essentially how anxiety-inducing living with a food allergy is," Pratt said. "Personally, I’d like to see more of that data. And through the registry, a lot of people have been excited to share that and to have a place to express that."

The registry is currently open and welcomes individuals in the U.S. with a diagnosed or well-documented food allergy (or their guardians if under 18) to participate.

Learn more about the FARE Registry and how you can get involved.