Spina Bifida and Muscular Dystrophy Prevalence Project
Description
There is only limited data about the prevalence of Spina Bifida (SB) and Muscular Dystrophy (MD) in the United States. Using publicly-available data sets and/or other data sources, this project will estimate SB and MD prevalence in the U.S. across the lifespan, examine race/ethnicity and potential health disparities for people with SB and MD, and update the literature on health care utilization, health care outcomes, co-morbidities and further examine people with SB.
Spina Bifida is a neural tube defect that affects the spine. SB is typically identified at birth and can result in various disabilities and lifelong support needs. Muscular dystrophy includes a range of disorders that vary in severity, age of onset, inheritance pattern, and specific affected muscle groups and other body organs.
In Year 1, this project developed and analyzed data to estimate SB across the lifespan. In Year 2, the project will continue this work and expand to include MD prevalence estimates. In collaboration with the U.S. Centers for Disease Control and Prevention (CDC) and Association of University Centers on Disabilities (AUCD), the project will analyze data and summarize results. As a final step, the project will collaborate with CDC and AUCD to create project reports and journal articles, translate data, and disseminate results to the public and other stakeholders.
- Contact
- Julie Bershadsky, Jennifer A Hall-Lande
- Director
- Jennifer A Hall-Lande
- Subcontract from
- Association of University Centers on Disabilities
- Funder
- Centers for Disease Control and Prevention
- Collaborators
- Association of University Centers on Disabilities
- Centers for Disease Control and Prevention
