A Timeline of Driving Family Member Testing
Beyond Celiac is driven to ensure that all people living with celiac disease receive an accurate and prompt diagnosis. To achieve this goal, Beyond Celiac makes sure that individuals who are a biological relative of someone diagnosed with celiac disease are properly educated about their increased risk of this genetic autoimmune condition. Beyond Celiac is the only organization offering a robust family testing intiative to drive down the rate of undiagnosed celiac disease.
Since 2012, Beyond Celiac has been dedicated to providing diagnosed individuals with the education and tools they need to successfully encourage their biological relatives to get tested for celiac disease. We are committed to moving the bar on diagnosis by developing a model that all people diagnosed with celiac disease can follow when speaking to their family members about celiac disease testing.
Beyond Celiac collaborated with the Celiac Center at Beth Israel Deaconess Medical Center (BIDMC) and Emerson College to identify key barriers to celiac disease testing among at-risk family members.
- February – April 2012 : Focus groups, interviews and a 37-item survey distributed nationwide evaluated the attitudes and beliefs about celiac disease testing among first and second-degree family members of someone clinically diagnosed with the disease.
- May 2012 : Beyond Celiac developed Family Talk, a series of tools for diagnosed patients to talk with their family members about celiac disease testing that included webpages, downloadable tools and a print brochure.
- Summer 2012 : Beyond Celiac partnered with the Jefferson Celiac Center to continue research in this area by surveying the Beyond Celiac community about their family history of celiac disease testing as recommended by their physicians.
While the work with BIDMC and Emerson College provided initial insight into at-risk relatives’ willingness to be tested, more was needed to expand our understanding of what messages and strategies will stimulate the short-term and long-term results needed to drive diagnosis.
- Spring 2014 : Beyond Celiac initiated a multi-phase research initiative to learn more about how untested family members want to have this conversation about testing for celiac disease, and if that differed from the ways we know our community typically holds these conversations.
Using the results of their primary research, Beyond Celiac developed a comprehensive education and communications campaign to initiate conversations about celiac disease testing in at-risk families.
- April 2015: Beyond Celiac launches its research-tested strategies using the campaign Seriously, Celiac Disease, which includes a national video public service announcement (PSA), new companion materials and online educational activities.