As a result, one of the biggest problems in understanding food allergy is a lack of accurate, large-scale information about individuals with this disease. This type of data would allow us to discover subgroups of patients with identifiable allergy causes, unique environmental exposures or who respond to a certain type of therapy.
While there have been attempts to gather data on patients with food allergies, these efforts are hampered by several limitations. There are no governmental databases on food allergies in the public health community like the ones for cardiovascular disease, renal disease or cancer. Academic institutions have this type of data, but it is kept on a small scale in individual collections that are not easily shared. Often, security or ethical concerns make it impossible to share data between private or public institutions in a way that will collectively help researchers.
We know this is a problem that resonates through the food allergy community. We recently brought leading researchers together with members of FARE’s Outcomes Research Advisory Board at our annual Research Retreat. This a diverse group made up of researchers, clinicians, industry representatives, educators and patients, including both parents and individuals managing food allergies. One of this group’s major concerns is that there is inadequate data to define the food allergy problem and to provide a basis for better diagnostics, clearer early life determinants of allergies and understanding of the psychosocial impact of food allergy.
Registry to Aid Research
With the prevalence of food allergy on the rise, FARE has decided we can’t wait any longer for this database to be created. That’s why in late May 2017, we launched the FARE Patient Registry to accelerate food allergy research efforts. This registry will be a repository of information on food allergy that will be widely available to the community and researchers. With today’s advancements in technology, a registry serves as a tool that can facilitate the organization of large sets of data and enable analysis of that data more efficiently. Using the registry, we seek to resolve unanswered questions about food allergy, uncover patterns of food allergy prevalence, and potentially identify treatments might be most effective for specific patients.
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.
Personal Allergy Management
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 former CEO of Food Allergy Research & Education (FARE). For more information, visit Foodallergy.org.