Despite all we know about food allergies, national data remains elusive – particularly surrounding how, when and where severe allergic reactions occur.
“Anecdotal evidence – and not actual numbers – is often used to create policies and procedures,” says Ruchi Gupta, MD, MPH, associate professor of pediatrics at Northwestern Medicine and Ann and Robert H. Lurie Children’s Hospital of Chicago. “A national registry is needed to capture a more realistic account of allergic reactions occurring in communities.
By collecting real-life statistics, researchers can help shape more efficient food allergy policies, adds Dr. Gupta, who also serves as an Anaphylaxis Community Expert (ACE) volunteer with Allergy & Asthma Network.
Early in 2015, Dr. Gupta and her team at Northwestern formed focus groups to develop a questionnaire for three anaphylaxis registries. A school registry is underway in three Chicago-area schools, an Emergency Department registry is underway at Lurie Children’s Hospital, and a parent registry is available online.
“Since the questions are very detailed, we’ll learn how children are exposed to their allergens and how their reactions are treated,” Dr. Gupta says. “We’ll also learn what foods kids are reacting to and how severe their reactions are.”
History shows that data collected from this type of registry can save lives through public policy changes.
A key statistic learned from the Massachusetts Department of Public Health’s anaphylaxis registry provided compelling evidence for why schools need to stock emergency supplies of epinephrine, the first-line treatment for anaphylaxis: 25 percent of anaphylactic episodes in schools occurred in people with no history of life-threating allergies. Without this data, 48 states might not have passed stock epinephrine laws as quickly as they did.
In November 2016, Dr. Gupta and her team will analyze the data and provide recommendations for future anaphylaxis policies and procedures.
“Knowing exactly what’s causing food allergy reactions and how they’re treated will help us target specific ways to educate people about anaphylaxis, reduce fear – and save lives,” Dr. Gupta says.
Want to participate? Anyone with a school-age child who has experienced an allergic reaction in the past year is invited to submit information about the incident to the parent version of the registry. Visit www.reportmyreaction.org.
By Brenda Silvia-Torma, MEd
Anaphylaxis Community Experts (ACE) is a national, award-winning education, advocacy and outreach program developed and hosted by Allergy & Asthma Network in partnership with the American College of Allergy, Asthma & Immunology, sponsored by Mylan Specialty L.P.
ACE volunteer teams across the country offer free awareness and training programs about food, latex and venom allergies, signs and symptoms of anaphylaxis, and how to use an epinephrine auto-injector. Teams include allergists, school nurses, community members and parents.