McLEAN, Va. (May 22, 2017) – Food Allergy Research & Education (FARE) today announced the launch of the FARE Patient Registry, 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.
Patients with food allergies or relatives of children with food allergies are encouraged to participate in the registry and help advance scientific discoveries by anonymously sharing their medical histories with scientists and others. This is a simple step that will provide critically important data to assist researchers in a number of ways and help individuals track their own clinical histories
FARE’s Patient Registry will collect and store detailed, de-identified information about people with diagnosed food allergies. Among its many uses, the registry database will be a valuable source of data on food allergy prevalence, demography, management and outcomes that can be accessed by researchers, clinicians, caregivers, pharmaceutical companies and others. In addition to data provided by patients, the registry will house information from doctors and hospitals, including the FARE Clinical Network, a collaborative network of 27 research and clinical care institutions across the country.
“Food allergies are a life-threatening medical condition for which we have no FDA-approved therapies.” said James R. Baker, Jr., M.D., CEO and chief medical officer of FARE. “The lack of accurate, large scale data for patients with food allergies is a problem that we aim to solve with FARE’s Patient Registry, a valuable new tool that will help us advance research on several fronts to develop and test new treatments and improve patient care. The 15-20 minutes that it takes for each individual to participate has the potential to make a big impact.”
Food allergy is a serious and growing public health issue that affects approximately 15 million Americans, including 1 in 13 children, or roughly 2 children per classroom. Allergic reactions to food can be severe or even deadly. There is currently no cure for food allergies; strict avoidance of the problem food(s) is the only way to prevent reactions.
The FARE Patient Registry leverages the Invitae Genome Network’s platform to enable permission-based sharing of patient data to advance the understanding and treatment of inherited health conditions.
FARE’s future plans for the Patient Registry include a repository of biological samples collected from food allergy patients at participating centers 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 a fully FDA-compliant manner, which will assist FARE in its advocacy efforts for regulatory approval of treatments.
“We’re pleased FARE chose our platform for its food allergy patient registry to create a safe and secure way for patients to share their health experiences and be connected to the latest research, treatments, and education,” said Kyle Brown, of the Genome Network at Invitae. “The information gathered through the registry may help contribute to the understanding of these life-threatening allergies and the development of much-needed treatments for patients.”
Participating patients will 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 clinical trials in their area. A patient would have the option of sharing this data with his or her healthcare providers.
To sign up and learn more, visit foodallergypatientregistry.org.
Food Allergy Research & Education (FARE) works on behalf of the 15 million Americans with food allergies, including all those at risk for life-threatening anaphylaxis. This potentially deadly disease affects 1 in every 13 children in the U.S. – or roughly two in every classroom. FARE’s mission is to find a cure for food allergies, and to keep individuals safe and included. We do this by investing in world-class research that advances treatment and understanding of the disease, providing evidence-based education and resources, undertaking advocacy at all levels of government and increasing awareness of food allergy as a serious public health issue. For more information, please visit www.foodallergy.org and find us on Twitter @FoodAllergy, Facebook, YouTube and Pinterest.