AAFA’s Food Allergy Patient & Family Registry
The Food Allergy Patient & Family Registry is a program to collect, manage and analyze data from and about people with food allergies. It will advance research through patient information.
The Registry is sponsored by the Asthma and Allergy Foundation of America (AAFA). It is the first and only data registry focused on the real-world experiences of people who have food allergies.
Data from the Registry will provide a better understanding of what is important to those living with food allergies. It will also provide critical information that researchers need to improve food allergy diagnoses and treatment. The ultimate goal is to find a cure for food allergies.
By joining the Food Allergy Patient & Family Registry, parents of children who have food allergies and adults who have food allergies can help improve the quality of life for the millions of people living with food allergies. Registration is easy, and participation is both voluntary and free.
What Is a Patient Registry and How Is It Used?
A patient registry is an organized system for collecting standardized or uniform data about a group of people who are affected by a particular disease or medical condition.
People experience life—and healthcare—as individuals. People are different. What works for one person may not work for another. That’s why we do research—to see what happens to large groups of people—and to figure out what works best (and for whom).
A registry is one way that we can do that kind of research. Patient registries allow researchers to use data from the real world experience of patients, by collecting data from them (or about them). Patient data can help researchers, clinicians, patients and policymakers understand what works best in the real world.
But registries permit more than research. When people share food allergy data with an organization like AAFA, it allows AAFA to understand how food allergies are affecting their lives. That gives AAFA the ability to “speak” (advocate) for people with allergic diseases, with confidence that we understand what those people need and what is most important to them, and with the authority that comes from truly listening to them.
How Will AAFA’s Registry Be Used?
Our goal is to build a Food Allergy Patient & Family Registry that will help us be able to:
- Advance research.
- Create knowledge that can benefit patients with food allergies.
- Help improve care and treatment for people with food allergies.
- Understand what is most important to people with food allergies.
- Learn more about how food allergies affect people in their daily lives.
- Help researchers better understand and improve treatments, and find out more about which ones are most effective.
- Improve quality of life for people living with food allergies.
- Contribute to research that will ultimately find a cure for food allergies.
We are beginning our registry efforts in food allergy, because we already have a large and very engaged community to engage—families who are part of KFA. An asthma registry will follow. Stay tuned!