- Blindness is understandably a major health fear, as sight is crucial for most activities of daily living. Globally, 36 million are blind. Among the leading contributors to blindness throughout the world, glaucoma is a disease that progressively damages the nerves connecting the eyes and brain. Glaucoma rates continue to increase with the growth of the aging population. In the United States, primary open-angle glaucoma (POAG), the most common glaucoma, is more prevalent and more aggressive in African Americans than other racial/ethnic groups. We seek to better understand this disparity by clarifying perceptions, barriers, and attitudes toward vision care in Cleveland, Ohio. Another reason to look at perceptions, barriers, and attitudes: early diagnosis and intervention are essential for preventing the most severe glaucoma outcomes (severe vision loss and blindness). Therefore, to make sure our work is most impactful, we need to understand what other factors (beyond genetics) are contributing to glaucoma development (like lack of access to vision care).
- We developed a Community Advisory Board (CAB) in partnership with University Settlement, an established community resource center with 92 years of trust in the interracial Slavic Village neighborhood of Cleveland. The research team collaborated with the CAB to develop qualitative interviews that were administered to approximately 60 clients of University Settlement over the one-year award period. Interviews will assess (i) perceptions of vision health and care, (ii) value placed on vision health and care, (iii) knowledge of vision health and care, (iv) barriers to vision health and care, (v) and feasibility of study participant recruitment for future research. Through understanding the significance of vision health and barriers to care, as expressed by the community, clearer points of intervention and access improvement will be illuminated. Without such innovative, transdisciplinary, and community-informed approaches such as this, millions will continue to go blind from this disease.
The Amish are a relatively isolated European American founder group descended from 18th and 19th century Swiss Anabaptist immigrants from Western Europe. Typical Amish observe a strict lifestyle and marry within their faith group. Diversity is thus reduced genetically and environmentally, providing a unique opportunity to study complex disease in a more controlled manner. The Amish are enriched for rare genetic variation in other ocular diseases and provide a matchless resource to understand POAG risk; this unique population could reveal novel loci that are not detectable using standard GWAS approaches applied to ethnically European individuals with POAG in prior studies.
Modern commmunication is not generally used; instead, contact is facilitated door to door or by mail. 30% of the Amish population age 65 and higher have been contacted for one or more studies, with a 87% participation rate. In total, there has been a 17 year ongoing ascertainment for various diseases and outcomes.
POAG risk is more than two-fold higher in African Americans compared to other U.S. racial/ethnic groups and is also more likely to both manifest at younger ages and cause blindness in African Americans. Further, there is a scarcity of research addressing the increased risk in African Americans, exposing a critical health disparities issue.
It is crucial to understand the complex interplay between POAG risk factors in order to identify disease earlier in the trajectory, and identify therapeutic targets beyond the current treatments. We will establish the foundation for a powerful longitudinal study and enable larger future studies including localizing novel and/or rare variants affecting disease pathophysiology and treatment response. This study is currently under review at the NIH as an R21 application.
Long-term: integrate genomic and health records data to identify clinically actionable modifiers that will ameliorate the clinical approach to and treatment of complex eye and kidney diseases.
- The prevalence of glaucoma in Caribbean nations has been estimated at 7-8%, nearly double what is estimated in African countries. Afro-Caribbean individuals are more likely to develop with glaucoma 10 years earlier than other ethnic groups. Despite an increased prevalence, both awareness and knowledge of glaucoma is low, especially in Jamaica.
- Increased knowledge of this population’s glaucoma burden can inform future public health interventions surrounding education initiatives, screening protocols, and more successful management of the disease. This particular study aims to further examine the prevalence and severity of glaucoma in Jamaica, as well as identify at-risk subgroups and disease patterns. Due to the higher prevalence and severity of glaucoma in Jamaica, further research and information for culturally relevant interventions can greatly impact the community.
The goal of the NEIGHBORHOOD Consortium is the complete understanding of the genomic architecture of glaucoma. The website is aimed primarily at scientists working on primary open-angle glaucoma (POAG). For more general information or advice about POAG, please see www.glaucoma.org.
TCB is a working partner of MVP which is a national research program to learn how genes, lifestyle, and military exposures affect health and illness. Our team looks at genetic risk scores related to primary open-angle glaucoma. Learn more about MVP at https://www.research.va.gov/mvp/.