Those wanting to support progress in food allergy awareness, advocacy, education, and research can now do so by joining the Food Allergy Research & Education (FARE) Patient Registry.
Registries are information hubs between patients with a particular condition, and researchers. They accelerate an understanding of medical conditions, such as food allergies, and stimulate the development of effective therapies to improve patients’ lives.
Anyone, anywhere in the world diagnosed with food allergies, and family members of kids with diagnosed food allergies, can participate in FARE’s registry. Those under age 18 will need a parent, or legal guardian to assist. By signing up, and providing an online informed consent, participants gain access to allergy insights, data, clinical trial information, and can share allergy experiences.
The personal information entered on FARE’s secure, password protected registry will build a searchable, anonymous database. Each participant can choose their own privacy settings, whether to share information, or be contacted about research opportunities. Participation can be withdrawn at any time.
Those who register will:
- Be asked to fill out an initial survey involving the patient’s experiences with food allergy.
- Have an opportunity to share diagnosis, symptoms, treatments used, and disease developments.
- Will potentially receive additional survey or information requests around specific areas of interest.
Sharing patient information will consolidate critical data that measures food allergy demographics, prevalence, clinical histories, allergy management, and treatment outcomes for use by scientists, clinicians, caregivers, and others.
Benefits of Joining
Patients, or their parents might use the registry to find information about reaction frequency, treatments used, and treatment efficacy. They can also track their own allergy history and progress. Since the registry is a global endeavor, it’s available in over 100 languages (just click the website’s “translate” icon).
Eventually, the Patient Registry will include a bio-repository of patient DNA, RNA, biopsy, and serum samples through collaboration with FARE’s Clinical Network locations. This could speed the discovery of genetic risk factors, environmental triggers, and serum biomarkers for food allergy.
Innovation and treatment breakthroughs require that massive amounts of data be collected and shared, and FARE’s Patient Registry will accomplish this. Those who participate will make a difference in the lives of all people with food allergies, and their families. Visit the Patient Registry website (link below) to sign-up, or learn more.