Over 400 people from 100 institutions around the world attended the World Congress on Spina Bifida Research and Care last week in Tucson, AZ. Fifteen topic areas incorporating material from over 100 submitted abstracts were integrated, with break outs for medical specialists including urology, neurosurgery, general pediatrics, orthopedics and neuropsychology as well as current areas of SBA focus sharing research on mental health, weight management, aging, sexuality, and our local area of research with the Spina Bifida Center at CCHMC, transition to adulthood.
Jason Woodward, MD, the Director of the Spina Bifida Center and Diane Burns our SBC Program Manager presented “The Barriers and Facilitators to Self-management, Self-advocacy, and Community Inclusion for Adolescents & Young Adults with Spina Bifida”. In this presentation, they communicated the results of the past three years of research that came directly from surveys, interviews and focus groups with parents and caregivers, teens and adults with spina bifida, pediatric and adult health care providers, as well as those who provide support services to people with SB in the community. We will be sharing these results with families soon as we also look to secure funding for a trial intervention to support transition based on our findings
Click here to view the conference agenda. Research shared at the conference will be published in an upcoming edition of the quarterly Journal of Pediatric Rehabilitation Medicine focused on spina bifida.