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Antidote Technologies announced the findings from a recent survey of 4,000 patients and caregivers about their attitudes towards clinical research. The survey was developed and distributed in partnership with Scorr Marketing and eight advocacy organizations: Allergy & Asthma Network, American Kidney Fund, GO2 Foundation for Lung Cancer, Healthline, JDRF, Lupus Research Alliance, Melanoma Research Alliance, and Multiple Sclerosis Association of America. Among the findings in the study was a distinction in the motivation between white individuals and people of color regardless of condition when considering volunteering for research.
People of color have traditionally been underrepresented in clinical research. Nearly 40% of the population in the United States are racial and ethnic minorities, but estimated rates of research participation for these groups range from 2% to 16%.1,2 For example, Latinos make up 18% of the American population, but just 1% of the clinical trial participant population.2 A lack of trust stemming from historical events such as the Tuskegee Study has been cited as a major barrier to participation. In order to develop drugs that are effective for everyone living with a particular condition, diverse participation in clinical trials is needed.
The survey revealed several factors that affect the participation of people of color, including trial type preferences, motivations for and barriers to taking part in a clinical trial, and logistical factors. Highlights include:
“I often hear from Antidote’s patient advocacy group partners about the need to even the scales in terms of research diversity,” said Lindsey Wahlstrom-Edwards, Head of Partnerships at Antidote. “These survey findings suggest that catering study design, outreach approach, and logistical support to specific populations will reduce barriers to participation, resulting in drugs that are effective for all those in need. This is especially critical in conditions that disproportionately affect communities of color, like lupus, asthma, diabetes, and Alzheimer’s.”
U.S. Census Bureau QuickFacts: United States. (2018, July 1). Retrieved November 20, 2019, fromhttps://www.census.gov/quickfacts/fact/table/US/PST045218.
DeArment, A. MedCityNews. (2019, July 8). As precision medicine grows, so does the importance of clinical trial diversity. Retrieved November 20, 2019, from https://medcitynews.com/2019/07/as-precision-medicine-grows-so-does-the-importance-of-clinical-trial-diversity/.