UPMC Adult Spina Bifida Clinic Team Participates in 2023 World Congress on Spina Bifida Research and Care

The 2023 World Congress on Spina Bifida Research & Care (SBWC 2023) took place March 22-25 in Tucson, Arizona. It is the only conference dedicated solely to the research, practical challenges, and real-life solutions for those living with Spina Bifida.

The conference allows participants to engage with experts and thought leaders, network across disciplines with those focused on research and/or treatment of Spina Bifida, participate in the preeminent conference showcasing Spina Bifida research, and develop collaborations for future research projects.

Brad Dicianno, MD, director, Sara Izzo, research associate and peer counselor, Darcie Ilg, PA-C, and Lisa Stanford, PhD, ABPP, UPMC Adult Spina Bifida Clinic, represented their team at the Congress.

Drs. Dicianno and Stanford presented orally at the conference. Dr. Dicianno spoke on several topics, including machine learning, mobile health systems, and the Pittsburgh Impairment Testing Tool (PITT). Dr. Stanford, who is also the vice chair for neuropsychology and rehabilitation psychology at UPMC, spoke on the design of neuropsychology services for adults with Spina Bifida.

Several other studies which UPMC experts contributed to were presented by colleagues. These involved energy expenditure in youth with Spina Bifida, mortality, pain and pain interference, quality of life, and skin injury prevention.

Dr. Dicianno moderated a breakout session on the topics of adult care, aging, and sexuality for those with spina bifida and their families and caregivers. The discussion topics included:

• Assessing End of Life Planning for Caregivers of Adults with Spina Bifida
• Establishing Content Validity Evidence of the Pittsburgh Impairment Testing Tool (PITT) for Adults with Spina Bifida
• Survival and Causes of Death in Adults with Spina Bifida in Sweden: A Population-Based Case-Control Study
• Sexual Health Developmental Milestones: Integration of Sexual Health Anticipatory Guidance in an Outpatient Spina Bifida Clinic - A Pilot
• The Experiences of Women with Spina Bifida with Obtaining Information About Sexuality and Access to Needed Reproductive Health Care
• Sexual Health and Experiences Among Adult Patients with Spina Bifida: A Cross-sectional Survey at a Tertiary Transitional Spina Bifida Center

Sarah Izzo, along with Dr. Dicianno and colleague Monica Albert Still, RN, BSN, presented in the poster sessions, showcasing their Peer Navigation Program for the Adult Spina Bifida Population.

About the UPMC Adult Spina Bifida Clinic

The only one of its kind in the region, the UPMC Adult Spina Bifida Clinic combines a variety of specialties to provide comprehensive, up-to-date care for adult patients. Our physical medicine and rehabilitation experts partner with urologists, neurosurgeons, and other specialty providers to deliver seamless, coordinated care.

Learn more.