Assessing demographic representation in diabetic retinopathy clinical research studies relative to united states diabetic population demographics

Title : Assessing demographic representation in diabetic retinopathy clinical research studies relative to united states diabetic population demographics

Abstract:

Purpose: Demographic representation in Diabetic Retinopathy Clinical Research (DRCR) studies is understudied and impacts the generalizability of results. This research aims to determine if the DRCR demographic data is representative of the United States (US) general diabetic population.
Methods: Demographics were obtained from the DRCR public datasets as well as the US Centers for Disease Control and Prevention (CDC) diabetes statistics report. A Chi-Square test and Post Hoc (Cross Tabulation) were done to compare the demographics and calculate the standardized adjusted residual between the gender (male and female), race (White, Black/African American, American Indian or Alaska Native, Native Hawaiian or Other Pacific Islander, Asian, and more than one race), and ethnicity (Hispanic or Latino and not Hispanic or Latino). Ethnicity subanalysis only included DRCR studies that provided ethnicity data. Adjusted residuals that are greater than 1.96 or less than -1.96 indicate statistically significant overrepresentation or underrepresentation, respectively.
Results: We found that there is a statistically significant difference between the population distribution of the DRCR and the US diabetic population as reported by the CDC (P<0.001). The most underrepresented populations in the DRCR studies are American Indian or Alaska Native, Native Hawaiian or Other Pacific Islander, and Asian (adjusted residuals of -42.2, -35.8, and -24.4, respectively). The white DRCR population is the most overrepresented demographic with an adjusted residual of 75. Additionally, Black and Hispanic populations were overrepresented with adjusted residuals of 8.4 and 6.1, respectively.
Conclusion: In conclusion, the DRCR studies may not be representative of the overall diabetic demographic. Future studies in this population could aim to balance race and ethnicity to improve generalizability.

Biography:

Nour Abou Shousha is an ophthalmology student intern at Massachusetts Eye and Ear Harvard Medical School. She has gained significant research experience, including research internships at Bascom Palmer University of Miami and Massachusetts Eye and Ear. At Bascom Palmer, she worked on stem cell therapy for visual pathway regeneration and evaluating ocular misalignment using a novel software on a virtual reality headset. Both projects were published in Investigative Ophthalmology & Visual Science. Her work has earned her multiple awards, including 1st place at the Broward Regional Science and Engineering Fair and recognition at the Florida State Science and Engineering Fair.