Institute for Clinical and Translational Research
The involvement of local community groups in research studies is a key step in connecting academic research to public health outcomes, and also one of the hardest. Leann Smith, PhD, associate scientist, UW-Madison Waisman Center, has demonstrated a remarkable ability to involve local family and advocacy groups in her studies of the interplay of stress, coping, and social support for parents of teens with autism spectrum disorders (ASD).
UW ICTR recognized the value of Smith’s research involving the autism community and supported her project with a Type 2 Translational Research Pilot Award. A key element of her proposal was involving community stakeholders to provide advice on developing and implementing an intervention acceptable and beneficial to families. Smith developed partnerships with family advocates from community organizations, such as the Autism Society of Greater Madison, and local professionals.
One measure of her success is the active participation of multiple community partners in her current evaluation of Transitioning Together, an intervention program for families of adolescents with ASD. Smith’s research has earned her an entrée into Wisconsin’s Community of Practice (see box) around ASD.
“Leann has been so rewarding to work with,” says Andrea Dearlove, MS, MA, ICTR Community-Academic Partnerships outreach specialist. “Her commitment to the autism community is tenacious and inspiring. She has involved her community partners throughout this research process and in so doing has strengthened her own research, as well as the community’s understanding and ownership of their vital role.”
Smith came to UW-Madison in fall 2006 and accepted a position in the NIH-funded post-doctoral training program in developmental disabilities research at Waisman. As an assistant scientist, she was awarded the ICTR pilot grant in 2009. That data led to a successful grant in 2011 from the national advocacy group, Autism Speaks.
This past year, Smith submitted an application for an NIH R34 in response to an RFA on autism and behavioral interventions for adolescents and family support (PA-11-283). In addition, she is currently the PI of the Transitioning Together project and a member of the Lifespan Family Research Lab at Waisman.
Smith continues to take advantage of ICTR resources through biostatistical consults and through ongoing training in qualitative research methods for herself and other team members via study modules and videos available on-line at the IME site (videos. med.wisc.edu/learningTheme.php?learningthemeid=3&orga nizationid=2). UW ICTR remains available to help her make connections and to solve issues unique to community-based research and qualitative outcomes.
The ICTR Role
“Quite honestly, ICTR is one of the major reasons I’ve been able to move this project forward. The pilot grant RFA and its focus on community engagement inspired me to apply, since I saw that ICTR valued my role as a community-driven researcher,” says Smith. “The pilot funding allowed me the time to work within the autism community to develop the curriculum and test its feasibility with adolescents with autism and their families.”
She continues, “Biostatistical and qualitative training support helped me conduct the research in the most effective and meaningful way and helped me prepare my application to Autism Speaks. The funding I now have from Autism Speaks will allow me to evaluate the program for efficacy.”
More information about this study is available on the Waisman Center web site (www.waisman.wisc.edu/family/study_trans. html), including information on how to get involved.