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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.
Preventive Medicine
|February 13, 2017
Summary
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.
