Waisman Center Funds Six Internal Grants to Expand DEI Efforts in Research and Clinical Services

Arezoo Movaghar, Anita Bhattacharyya, Bernadette Gillick, Erin Thomson, Brittany Travers, Tim Markle

By Emily Leclerc, Waisman Science Writer

Diversity, equity, and inclusion (DEI) are critically important goals for the Waisman Center and UW Madison. To push closer to that goal, Waisman offered grants up to $20,000 to be used over two years with the purpose of, “advancing research that is accessible to, informed by, and representative of diverse individuals within the field of IDD in a way that fosters equity and inclusion.” Six proposals were selected to receive a grant, each focusing on different ways to increase DEI in the research and clinical work taking place at the Waisman Center. “UW Madison’s campus as a whole is committed to increasing diversity, equity, and inclusion,” Qiang Chang, PhD, director of the Waisman Center, says. “The Waisman Center is equally as committed and these grants are another step forward in pursuing our DEI goals.”

Improving the Journey from Diagnosis to Treatment

Adequate representation of ethnically and racially diverse populations in medical research, clinical practice and policy development remains an ongoing issue. Fragile X syndrome (FXS)—the leading inherited cause of intellectual disability— is no exception. FXS continues to be underdiagnosed in the general population and it tends to take a long time for patients to receive proper services. This can have a huge impact on individuals as FXS can significantly affect the health and well-being of patients and families. This impact may be even more severe in patients from ethnically and racially diverse populations as they often have more limited access to care and services compared to other patients. Little is known about the diagnostic journey for these individuals and how their experience in access to a genetic test for FXS differs from other patient groups.

Arezoo Movaghar, PhD
Arezoo Movaghar, PhD

Arezoo Movaghar, PhD, a postdoctoral fellow in the Lifespan Family Research Lab under supervision of Waisman investigators Marsha Mailick, PhD, and Leann DaWalt, PhD, was awarded a DEI grant to learn more about the diagnostic journey of individuals with FXS from diverse ethnic and racial populations. “Using patients’ medical data, we will investigate how long it takes for an individual who has symptoms of FXS to obtain a genetic test for this condition; what are the patterns of health care utilization they experience before obtaining a diagnosis; and how does this differ for underrepresented and underserved populations,” Movaghar says. She hopes to not only advance research representative of diverse groups to foster health equity but to also reveal the barriers facing underrepresented and underserved patients when seeking diagnosis, treatment, and services.

The DEI grant funding of this research will provide the opportunity to one day improve patient-centered care and their health outcomes. “Diversity in medical research is critical in understanding the clinical needs of different patient groups and providing proper care and treatment for each individual,” Movaghar says. “It will also facilitate identification and elimination of factors that could limit patients’ access to healthcare.”

 

Creating Greater Diversity in the Center’s Stem Cell Lines

Anita Bhattacharyya, PhD
Anita Bhattacharyya, PhD

The Waisman Center has a long history in stem cell research. The discovery of how to create induced pluripotent stem cells (iPSCs) in 2006 revolutionized not just stem cell research but the entire field of biology. iPSCs also had a huge impact on intellectual and developmental disabilities (IDD) research. Waisman has established more than 80 iPSC lines with 34 of them coming from individuals with an IDD, which allows for more focused IDD investigations.

Anita Bhattacharyya, PhD, assistant professor of cell and regenerative biology and a Waisman investigator, is working to increase the diversity of Waisman’s iPSC lines to include underrepresented individuals. The DEI grant Bhattacharyya was awarded will allow for this diversification.

“At the Waisman Center, researchers are using iPSCs generated from individuals with different IDDs (e.g. Down syndrome, fragile X syndrome, Rett syndrome, non-syndromic autism) to identify the differences in brain development that occur in these disorders,” says Bhattacharyya. “Yet, most available iPSCs do not reflect the genetic diversity of individuals who have these disabilities. This proposal aims to address this gap by generating iPSCs from a more representative and diverse population.”

 

Increasing Representation in a Study of Brain Injury Recovery

Bernadette GillickBernadette Gillick, PhD, MSPT, PT, leads Waisman’s Pediatric Neuromodulation Lab (PNL). Gillick and her lab are focused on studying recovery from brain injury in infants and children to learn more about how to encourage that recovery. This DEI grant is going toward supporting several initiatives in the PNL.

All of the lab’s initiatives stem from the overarching goal to improve the diversity of recruitment to their NIH-funded Baby Brain Recovery Study (R01HD098202). This study is investigating the recovery and development of the infant brain after a perinatal brain injury. Under this larger umbrella, Gillick and her lab have four goals that will be assisted by this funding: training a DEI and accessibility specialist in the lab; putting together an advisory committee to identify barriers and opportunities for research participation; financially supporting travel and accommodations for research participants; and translating lab materials into Spanish. As part of the lab’s Multilingual Access Project (MAP) the initial stages of the Spanish translation can already be seen on their lab website, allowing caregivers who speak only Spanish to learn about the Baby Brain Recovery Study in their preferred language.

“We collaborate with Madison and Milwaukee community organizations to connect with historically underserved and underrepresented populations to facilitate learning about research participation opportunities and the Waisman Center. This grant financially supports families travel to the Waisman Center for the first two-day visit of a two-year longitudinal study,” says Veronika Mak, the PNL’s research program coordinator.

The PNL aims to develop research that incorporates populations as representative as possible and to improve the understanding of infants’ first two years of life after a perinatal brain injury.

 

Improving Follow-Up Care to Increase Access to Care

Erin Thomson, MSW, LCSW
Erin Thomson, MSW, LCSW

The Autism and Developmental Disabilities (A&DD) Clinic provides initial diagnoses and on-going medical care for individuals with autism or other complex developmental disabilities. Many individuals and families rely on the specialized care received at this clinic. An important part of the clinic’s ability to provide such high levels of care is the family navigation team. The family navigators assist families in understanding and getting access to the care they need.

This grant will support the family navigators in being able to provide consistent and on-going follow-up care to systematically marginalized families to ensure their continued access to care, support, and opportunities. “The grant will allow our A&DD Clinic family navigation team additional staff time to build relationships with families over the course of the months following their appointments in the clinic. The initial contacts will focus on helping families connect to needed community resources, which are often difficult to navigate,” says Erin Thomson, MSW, LCSW, clinic coordinator for the A&DD clinic. “Over time, in subsequent contacts, we will insure that families are made aware of the research happening at the Waisman Center by helping them to connect to the research registry and to the link of the research opportunities on the website.”

In particular, the family navigators plan to focus their efforts on medically underserved families, particularly those with Medicaid as their primary insurance as a substantial amount of Black, Indigenous, and people of color (BIPOC) children are covered by Medicaid/CHIP. The hope is that these increased efforts will prevent vulnerable patients from falling through the cracks. Thomson also understands the importance of ensuring that all families who need the clinic’s services, receive equal and appropriate access to that care.

“The inclusion of diverse voices in scientific and clinical spaces deepens our understanding of developmental disabilities, which will allow us to advocate more effectively for the needs of all families, and ensure that the stories told by the research reflects the true lived experience of all,” Thomson says.

 

Creating Greater Research Accessibility for the Latinx Community

Brittany G. Travers, PhD
Brittany G. Travers, PhD

Brittany Travers, PhD, associate professor of kinesiology and Waisman investigator, has dedicated her lab to studying human movement and the associated brain structures in autistic and non-autistic individuals. She is investigating the development of motor differences in autistic individuals and the brain mechanisms behind those differences with the goal of identifying what interventions can be implemented to enhance motor skills. But Travers has realized that her research underrepresents individuals from the Latinx community.

To rectify this, Travers plans to use this grant to achieve several goals. “The most important endeavor in this grant is to establish a bi-directional, mutually beneficial relationship with the community, including Padres e Hijos en Acción and members of the Latinx community of Dane County,” Travers says. “The work this grant supports is to create structures that support this meaningful engagement and that ensures that members of the Latinx community are getting back as much as they are giving when they take their time to participate in research.”

Travers hopes that these efforts will not only make her research more accessible and useful for the Latinx community but will also help the Latinx community’s needs be better met in terms of autism research. She also plans to use what she learns to create resources for other Waisman labs looking to better serve the Latinx community. “The Wisconsin Idea suggests that the work we do at UW-Madison should benefit the lives of the community, the state of Wisconsin, and the world,” Travers says. “This includes our Spanish-speaking community here in Madison, and we need to continue to strive to make our research broadly accessible and representative of our community.”

 

Increasing the Southern Regional Center’s Outreach to the Black Community

Tim Markle
Tim Markle

The Southern Regional Center for Children and Youth with Special Health Care Needs, which is part of Waisman’s University Center for Excellence in Developmental Disabilities (UCEDD), is dedicated to supporting families with children and youth with special health care needs or disabilities and the providers who serve them. In order to better serve those families, the Southern Regional Center has been working to improve their relationships with historically underserved groups and the community organizations that support them.

As part of that initiative, the Southern Regional Center hired a consultant to help the center learn about and better connect with the Black community in Madison. The consultant, Felica Turner-Walton, has already provided important information and insight to better enable the center to serve Black families. This grant will allow the Southern Regional Center to retain Turner-Walton’s services for a longer period of time. “This grant allows us to make commitments to the Madison area African American community,” says Tim Markle, a parent of a young adult with special health care needs and the director of the Southern Regional Center which includes Adams, Columbia, Crawford, Dane, Dodge, Grant, Green, Iowa, Juneau, Lafayette, Richland, Rock, Sauk and Vernon counties.

Markle hopes that this will be the start of a fruitful relationship between the center and Madison’s Black community. “Through connecting with families and organizations, by listening to their needs, by providing resources in a culturally responsive way, we will build trust with the community,” Markle says. “Once that trust is built, then we can begin to have partners who can help us design research questions, join research teams, and participate in research. It all begins with mutually beneficial relationships.”