Following the Vanderbilt Kennedy Center’s (VKC) renewal as a national Eunice Kennedy Shriver Intellectual and Developmental Disabilities Research Center in 2020, the center underwent a shuffling of their four scientific cores that support basic and applied research on intellectual and developmental disabilities (IDD).
While the services offered through the cores are broad, the clinical translational core, directed by Beth Malow, MD, MS, includes two new and specific aims —enhancing the inclusion of IDD populations into ongoing research studies and working to incorporate non-traditional approaches into IDD research.
Speaking about the first aim, Malow said, “We want to be inclusive of everyone in research studies. It’s critical because there’s so much variability in response to treatment and side effects, and if we don’t include a specific group, we won’t know the outcomes for them.”
Malow also said that inclusivity is vital to getting people to take a new treatment. If a group feels they haven’t been properly represented in studies, there may be more hesitancy in implementing that treatment.
Jeffrey Neul, MD, PhD, director of the VKC, agrees with Malow.
“We want to make sure we include people with IDD so they can benefit from the potential development of these therapies and approaches,” he added. “People with IDD have the same health conditions that anyone else has, so we want to make sure we remain inclusive of people of all abilities to hopefully improve their lives down the road.”
People with IDD have historically been underrepresented in research studies, which means both patients and clinicians need education on how to successfully move forward.
Non-traditional approaches are sometimes needed to recruit and retain participation from the IDD population, and clinicians often need specialized training to effectively interact with people who have different communication needs.
Recognizing these potential challenges, VKC faculty and staff work to create resources for patients and their families, as well as clinicians. They examine perceived barriers to including people with IDD in research studies and create toolkits to prepare researchers for the inclusion of IDD populations in studies.
Current toolkits cover topics from ethically gaining study consent from people with different communication abilities to helping patients overcome sensory sensitivities which may affect study results, like drawing blood or undergoing an MRI. The VKC also creates toolkits for patients and their families, the majority of whom have never taken part in research studies before.
“We have resources for both patients and their caregivers, as well as for providers. The goal of these resources is to make it easier for research teams to include people with IDD in their studies and easier for people with IDD to participate,” said Neul.
Malow and Neul’s most recent focus has been working with Buddy Creech, MD, MPH, director of the Vanderbilt Vaccine Research Program, and his team to ensure inclusivity in pediatric COVID-19 vaccine research.
But inclusivity in studies analyzing long-term health conditions such as diabetes, asthma and obesity is just as important to the VKC, since people with IDD are often at a higher risk of developing these long-term conditions.
“By involving even a handful of people with IDD in research studies and supporting that effort with our toolkits, we hope people will start to see that inclusion is not as daunting as they may think it is, and that there are a lot of benefits to being inclusive,” said Malow. “People with IDD are great research participants. We’re just working to demonstrate that.”