Mistry noted that even with a focus on this particular patient group, it would be possible to enroll a different cohort of patients than the overall population of people with disabilities in the United States. It emphasizes the importance of patient and community involvement and representation in the research it receives, and community partners have been involved in the research from the earliest stages.
“We have worked with these partners for over several years to ensure that the study design reflects what is important to them to measure as a result. We will continue to work with them throughout the project to ensure we are enrolling a representative and diverse patient population.”
Yolanda Vaughn, a patient partner in this study, has worked with Vanderbilt University for the past 15 years as a community trainer, Community Engagement Studio facilitator, and patient advocate.
“This project aligns with my desire to help researchers get the information they need to get medicines, treatments and resources into communities faster,” said Vaughn. “It’s a job worth doing and I believe that if one of us gets sick, we all get sick. So if we all get better, our community gets better.” and our world will be a better place.”
While continuing to advise researchers, Vaughn sees himself as a sort of “evangelist” for the project, keeping patients and doctors informed of what’s going on, answering questions, and assisting with enrollment efforts. ing.
“I think there is value in getting everyone involved in research when appropriate. I think one thing means that we need to work on building trust in our community. We intend to respect you and our intention is not to hurt you,” she said. “The more people we can involve, regardless of race, ethnicity or gender, the richer our data will be.
