Lauren S. Aaronson Pilot Award: Courtney Berrios, MSc, ScM, CGC
By Frontiers , Clinical and Translational Science Institute
Sep 03, 2024
Pilot Study Title: Moving from Diagnosis to Improved Outcomes: Engaging Community Members to Identify and Address Barriers in Rural Translational Genomic Research and Medicine
Rural communities have historically been excluded or poorly represented in medical research. Courtney Berrios knows that researchers need to make sure that historically underrepresented communities are included in research and that they have equitable access to research outcomes to receive the same benefits as more represented communities.
At Children’s Mercy Hospital, researchers have made strides in identifying genetic causes of disorders in children in rural communities through their Genomic Answers for Kids program. But, once a genetic cause is identified, families are likely to require extensive follow-up care including appointments with various specialists. Not only is this time-consuming, but it also requires access to providers. As Berrios says, “Overcoming the barrier to getting genetic testing doesn’t necessarily overcome the barrier to getting the follow up care that’s needed.”
Berrios and her team are taking steps to solve this problem. In her Lauren S. Aaronson Pilot Award, Berrios is partnering directly with rural communities to understand the unique difficulties that rural families experience when faced with rare genetic diagnoses and subsequent follow up care. Generally, rural families have limited access to specialists, but Berrios also wants to know exactly what other barriers are in place so that she and her team can develop solutions to overcome them. She is looking to families and primary care providers in rural communities for answers. Her team is planning to follow up with approximately 15 rural families who have participated in Genomic Answers for Kids, asking them what barriers there are to follow up care and how they think these barriers can best be addressed. Additionally, Berrios plans to ask the same questions with primary care providers who are on the ground and familiar with these communities. Participating families and providers will all represent rural communities in the Kansas and Missouri areas.
Berrios hopes this study will help develop solutions that increase access to follow-up care and eventually lead to their implementation, so that all who need high-quality care can get it.
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