The Asthma and Allergy Foundation of America (AAFA) has announced the launch of the Food Allergy Patient & Family Registry, a portal designed to collect information that will support research to improve quality of life and lead to a cure.
“Collecting data from patients with food allergies about their health and lifestyle is a potentially transformational moment for food allergy research,” said Cary Sennett, MD, PhD, FACP, AAFA’s President and CEO. “The Registry will provide ‘real world evidence’ that speak to the patient and family’s experience; a critical complement to strictly medical data. Ultimately, bringing these disparate data together will help us better understand how to prevent, diagnose, and treat those with food allergies — and also how to improve the lives of those for whom it is a constant reality.”
The Registry is a secure, private, Web-based program. Participants will be able to share information about their experiences and opinions about living with food allergies and their quality of life. Participants can also provide feedback and suggestions for future research that would be most meaningful to them.
“Patients play a bigger and more critical role in research today,” adds Lynda Mitchell, Founder of AAFA’s Kids with Food Allergy community and AAFA’s Chief Operating Officer. “The Food Allergy Patient & Family Registry is the only registry of its kind, and an exciting way for AAFA to engage adults with food allergies and families raising children with food allergies in the research process.”
We urge all individuals and families coping with food allergies to participate in the Registry. By doing so, you help facilitate the collection of much needed context and insight into living with the disease that researchers can then draw upon.
Learn more about the Registry, sign up, and contribute by clicking here.
This is so exciting!!! My husband (software engineer/developer) and I (data analyst) have been saying since our son’s diagnosis that something like this needs to exist to accelerate information sharing, learning, and the pinpointing of areas for further research. I observe parents in Facebook groups sharing amazing qualitative data that needs to be synthesized and examined for trends. I hope Snack safely and others can share this registry far and wide so we can start compiling that wealth of data!