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National Hepatitis B Data Repository
B Free CEED has partnered with the National Hepatitis B Taskforce to create a National Hepatitis B Data Repository for organizations conducting community screenings to share data.
Why We Started This Project
Estimates of the prevalence of chronic HBV at a national level under represent Asian Pacific Islanders (APIs). Numerous community-based screenings of chronic HBV have been conducted in many different API communities across the U.S. that indicate a high prevalence of HBV among APIs, yet this data has not been disseminated to help inform programs and policies at a national level. A lack of resources has made it difficult for us all to enter the data in a common database. We are offering the resources to help make this possible. The repository will not only serve as a national HBV screening data center, but will also optimize the information collected to inform public health practitioners, researchers, and policymakers.
About the Project
The project aims to collect demographic, serological and HBV–related medical background of individuals who attain community screening events across the U.S. Because most of the community screening events target specific groups, we also collect information on the screening events in order to refine our estimation on the prevalence of chronic hepatitis B infection.
The Hepatitis B Foundation, Ohio Asian Festival, Vietnamese American Cancer Foundation, Asian American Health Coalition of Greater Houston/HOPE Clinic are the first organizations to participate in this project . In total, they have screened and surveyed more than 4000 individuals with a standardized survey or similar questionnaire. Participating organizations can either forward CEED their datasets or enter in the information themselves through a web-based database online.
No personal identifiers will be collected. Data will be entered into a password, protected, HIPPA-compliant, web-based database that will be configured by B Free CEED and NYU School of Medicine. All organizations who agree to share data will sign a mutual MOU, to ensure privacy and ownership of data. Aggregated result will be available for all the participating organizations.
We invite more organizations and screening sites to participate in the project!
If you are interested in participating, please contact:
Chia-hui Peng, MPH
Data Manager at NYU School of Medicine - Saul Krugman Division of Pediatric Infectious Diseases
Please include a short description of your organization and the screening events