Last week, we launched the FARE Patient Registry, one component of our strategic plan to advance food allergy research. This registry is a vital tool that will harness the power of patient data to accelerate research toward revealing the causes of food allergy, uncovering why food allergy rates have increased in recent years and identifying which treatments might be most effective for individual food allergy patients.
We asked FARE Patient Registry Director, Luis Garcia, to explain more about the registry, his role, and why individuals and families should join the registry.
What is your role at FARE?
I work as the Patient Registry Director, which is one part of the incredible research team here at FARE. I play a key role in the creation and implementation of the FARE Patient Registry, including platform and survey development, data curation and working closely with technology vendors and our medical advisory board and staff.
What is a patient registry?
Registries are databases that collect patient information on groups of people that share a disease or condition. They are incredibly useful for analyzing all the valuable information that’s created during the care of a patient. This is how we see patterns and make insights that lead the way to new discoveries. A registry can be anything; a simple spreadsheet or what physicians called the “shoe-box of index cards.” But that’s a thing of the past. Thanks to the availability of information technology and the internet, registries have now become more sophisticated. Our registry is a web-based patient-powered database of patient-reported experiences that can be accessed anywhere from a desktop, tablet or mobile phone. This data can be shared anonymously and used to advance research.
What are the goals of the FARE Patient Registry?
We have several goals: We want to create a global database of patient data that can be used by researchers to advance scientific understanding of food allergies and use this to develop better diagnostics and treatments. When completed, this will be the most comprehensive patient registry focusing on food allergies, and it will provide researchers with patient reported outcome data, electronic health records and serve as a recruitment resource for clinical trials. We also hope that making anonymous data available for research will encourage students and other researchers to take on a career in food allergy. However, our main goal is advocacy. We want patients to take ownership of their healthcare. We want to create a patient that’s better educated, engaged and informed in all aspects of food allergy care. For this reason, we offer abundant resources on foodallergy.org for patients to learn everything they need to about food allergies. This is what patient-powered research is all about.
Who can participate?
Anyone can participate — adults and parents of children diagnosed with food allergies. Also, the registry has no geographic or age restrictions and can be accessed in any language using Google Translate.
What are the benefits of participating in the FARE Patient Registry?
The most important benefit is the opportunity to contribute directly to the search for new treatments and a cure. Patients can use the registry as a personal repository to track food allergy reactions. Also, by participating in clinical trials, patients can potentially benefit from promising new treatments before they are widely available.
How does one person participating make a difference for food allergy research?
I’m going to borrow a great quote from Michael J. Fox on encouraging participation in Parkinson’s disease clinical trials. He said, “participating in research makes you an agent of change.”
How do I sign up?
Signing up is easy. Go to www.foodallergypatientregistry.org and click “register now.” Once you register, you will be directed to complete the food allergy initial survey. We will send you additional surveys in the future. It’s as simple as that.