Description

This project aims to provide a robust prevalence estimate for spina bifida in the United States (U.S.). Through our birth defects registry work, we estimate 1 in every 2,758 births is impacted by spina bifida. However, we do not have an estimate of how many people of all ages live with spina bifida in the U.S. and if the prevalence differs by sociodemographic or other factors. It is important to understand the impact of spina bifida, including how many people live with the condition. It is also important to understand more about the prevalence of spina bifida among subgroups to inform work that may be needed to address health equity. In collaboration with partners at the Centers for Disease Control and Prevention (CDC) and Association of University Centers on Disability (AUCD), we will use publicly-available data sets and/or other data sources to estimate spina bifida prevalence across the lifespan, capturing all those living with spina bifida in the United States. We will identify national data sources to estimate spina bifida prevalence. We will review existing national data, secure access to data, obtain data, and develop an analytic plan (in consultation with CDC and AUCD) to estimate the number of persons of living with spina bifida in the United States. Our UMN team will conduct in-depth, coordinated data analysis, and then summarize data results in consultation with partners at CDC and AUCD. As a final step, we will draft a manuscript with CDC and AUCD, translate the data, and disseminate results to public and other stakeholders.

Contact
Jennifer A Hall-Lande, Julie Bershadsky
Director
Jennifer A Hall-Lande, Julie Bershadsky
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

Staff

Jennifer A Hall-Lande :: Researcher


Julie Bershadsky :: Director, Community Living and Employment