This registry is powerful because it is the basis of patient-powered research. Everything that happens to an individual – an allergic reaction, each emergency room or doctor visit – provides data. Your child’s vital statistics, the medications they have taken, their type of reactions and symptoms, all can help shed light on the processes that underlie food allergy. FARE’s Patient Registry provides the vehicle by which this data can be collected and then analyzed for hidden clues to improve patient care. The registry can also aid prospective studies that track patients across their lifespans to evaluate the natural progression of food allergy.
Importantly, FARE’s Patient Registry will be structured so that individual privacy is assured. All data that is collected and stored will be de-identifed, meaning the information that personally identifies you or your child is removed.
Our registry will include both patient-entered data as well as doctor and hospital data, which could be transformative for food allergy research. Patients will be encouraged to log in regularly to update their registry information with everything from allergic reaction reports to quality of life issues. In addition, FARE’s Clinical Network of 27 clinical care and research institutions will help to gather data in a systematic manner, and support research nationwide. These sites can provide information from de-identified electronic health records and other clinical data to enhance the registry.
Registry’s Role as Personal
Allergy Management Tool
Participating patients will also be able to use the registry as a food allergy management tool to help them keep records of their allergic reactions, track the progression of their disease, and connect with local clinical trials. A patient also would have the option of sharing this data with his or her health-care providers.
Our future plans for the Patient Registry include a repository of biological samples collected from patients in the FARE Clinical Network. DNA, RNA, biopsy and serum samples will speed the discovery of serum biomarkers, genetic risk factors and environmental triggers of food allergy. Data will be collected in an FDA-compliant manner, which will assist FARE in its advocacy efforts for regulatory approval of treatments.
This is truly an exciting time for food allergy research, and we believe that FARE’s Patient Registry will play a pivotal role in its acceleration. We hope that you will visit the new patient registry at Foodallergypatientregistry.org, where you can take health surveys, upload medical records and track health outcomes, all while keeping informed about the latest research and clinical trials.
Those 15 to 20 minutes that you spend providing data are worth more than you know.
Dr. Jim Baker is the CEO of Food Allergy Research & Education (FARE). For more information, visit Foodallergy.org. This article was first published in the Summer 2017 issue of Allergic Living magazine.