Related Experiment Video
Updated: Mar 7, 2026
A Neonatal Mouse Spinal Cord Compression Injury Model
Published on: March 27, 2016
Scorecard for spina bifida research, prevention, and policy - A development process
Vijaya Kancherla1, Salimah R Walani2, Aliki P Weakland3
1Center for Spina Bifida Prevention, Department of Epidemiology, Emory University Rollins School of Public Health, Atlanta, GA, USA.
Insights
This study developed country-level scorecards to assess global progress in spina bifida (a preventable birth defect) surveillance, prevention, and care. The PUSH! Global Alliance aims to improve outcomes for affected individuals worldwide.
Area of Science:
- Public Health
- Global Health
- Birth Defects Research
Background:
- Spina bifida is a significant neural tube defect causing mortality and lifelong disability.
- The People and Organizations United for Spina Bifida and Hydrocephalus (PUSH!) Global Alliance seeks to increase visibility for spina bifida and hydrocephalus.
- A need for evidence-based assessment of national performance in spina bifida surveillance, prevention, and care was identified.
Purpose of the Study:
- To describe the development of country-level scorecards for spina bifida surveillance, prevention, and care.
- To provide a tool for assessing and improving national efforts in addressing spina bifida.
Main Methods:
- Formulation of six actionable indicators by the PUSH! Executive Committee.
- Indicators measure: folate studies, prevalence/mortality surveillance, prevention policies, access to care, and quality of life.
- Development of rubrics for scoring countries, pooling scores, and creating country-specific recommendations.
Main Results:
- Country scores were developed based on the six indicators, with composite scores ranging from 0 to 6.
- Scorecards included recommendations to aid policymakers in improving surveillance, prevention, and care.
- Scorecards were grouped by WHO regions and made publicly available on www.pu-sh.org.
Conclusions:
- The developed scorecards offer a standardized method for evaluating national spina bifida programs.
- These tools can guide policy and interventions to accelerate progress in preventing and managing spina bifida globally.
- Public accessibility of scorecards promotes transparency and collaborative efforts towards better health outcomes.
Abstract:
Spina bifida is a serious and largely preventable neural tube birth defect and an important cause of mortality and lifelong disability. The People and Organizations United for Spina Bifida and Hydrocephalus (PUSH!) Global Alliance was formed in 2014 to provide a common platform for various organizations worldwide to raise the visibility of spina bifida and hydrocephalus. In its formative phase, the alliance recognized that in order to accelerate surveillance, prevention, and care for these conditions, there was a need to provide an evidence-based assessment of how nations are performing in specific areas. In this paper, we describe the impetus for, and the process of, developing country-level scorecards for spina bifida surveillance, prevention and care. The PUSH! Executive Committee formulated a comprehensive list of six actionable indicators measuring availability of published studies on population-based folate studies; surveillance of prevalence and mortality; prevention-based policies; access to care; and quality of life associated with spina bifida. Rubrics were developed to score each country on the aforementioned indicators. Country scores were pooled across each indicator and the composite scores ranged between zero and three if there was a need for improvement, four and five if they were in good standing, or six for an excellent status. The scorecard included country-specific recommendations assimilated from the literature and published guidelines to aid policy makers in accelerating surveillance and prevention, and improving the care and quality of life indicators. For comparison, country-level scorecards were grouped by WHO-regions. Score cards were made available publicly through the website "www.pu-sh.org".
