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Florida Birth Defects Registry
The University of Florida, Maternal Child Health and Education Research and Data Center, Informatics and Database Management Team has developed and implemented a statewide population-based surveillance system of birth defects by merging statewide multi-source birth defects databases.
Objectives:
- Work collaboratively with the Clinical Genetics Groups at UF and USF, the Administrative and Epidemiology Group a FAMU, the Statewide Advisory Group, and the Department of Health (DOH).
- Be the central repository of statewide population-based data and information on birth defects. Collect birth defect data from statewide sources and merge to form a Florida Birth Defects Registry (FBDR).
- Manage the FBDR databases which are acquired from multiple sources statewide.
- Compile birth defects data and provide benchmark statistics in tabular format.
- Prepare countywide and statewide FBDR Reports that monitor the statewide incidence of birth defects.
- Develop, maintain, and implement security system for FBDR.
- Develop, maintain, and implement confidential information procedures.
- Develop mechanisms for implementing and reporting fee schedule for non-DOH data requests.
- Submit quarterly to PI at FAMU contract-related fiscal and programmatic work products.
Major Worktasks:
- Create and maintain birth defects files.
- Design all data tables, data views and reports.
- Develop and maintain a comprehensive data directory.
- Design and maintain accurate meta-data.
- Define any additional data sources.
- Develop public access version of FBDR summary data to be distributed on DOH website.
- Maintain security and confidentiality of Information System.
Specific Worktasks:
- Develop FBDR tables which will describe statewide and by county, using CDC reporting categories: the occurrence of birth defects by type, birth defect rates, and birth defect trends.
- Develop methodology for acquisition, merging, management, analysis and reporting of data from licensed health care providers, in conjunction with the Clinical Genetics and Epidemiology groups.
- Develop an evaluation plan in conjunction with the Clinical Genetics and Epidemiology groups.
- Develop capacity to produce standard tables of birth defect rates, counts, and annual reports, in conjunction with the Clinical Genetics and Epidemiology groups.
- Develop database management capacity for multiple malformations, in conjunction with the Clinical Genetics and Epidemiology groups.
- Develop and document mechanisms to ensure confidentiality of patient records, in conjunction with the Clinical Genetics and Epidemiology groups.
- Provide technical training in data linking methodologies.
- Maintain information security policies, protocols, and procedures for FBDR.
- Maintain confidentiality security policies, protocols and procedures for FBDR.
- Have a designated security coordinator who will monitor and maintain security policies.
- Have a designated information coordinator who will monitor and maintain confidentiality policies.
- Develop and maintain retention and archiving records policy.
- Maintain secured areas of information storage and backup.
- Maintain release of data protocols and policies.
- Maintain information resource management security policy.
