Table of Contents
Council on Nursing Informatics
NC Nurses Association
 
 
 
 

 

 
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Registries

Rationale

Registry purpose: data** - information - knowledge

  • Established for various dx and health problems, differing goals/objectives
  • Hospital- or population-based; or local, central, regional, national
  • National Cancer Act of 1971 - collection, analysis, dissemination, diagnosis, tx
  • SEER Program (surveillance, epidemiology, end results) population-based gives CA trends - incidence, mortality and pt survival.
  • Surveillance mechanisms for specific disease processes or incidence.
  • Monitor impact of using medical devices/tx assess health issues, exposure to hazardous substances.
  • Mission, design, size, technology, regulatory bodies - vary with type of registry. [Top]
    •  ** Actual data vary by registry

    Common registries

    		 Cancer, trauma, heart disease, AIDS, diabetes mellitus, kidney disease, birth defects, liver dx, hazardous substances, medical implants - - all have some form of registry.
    • Birth Defects:
      • Ability to monitor differing birth defect rates in different areas
      • Comparisons may identify clusters - plan, develop, implement tx and prevention
    • Diabetes
      • Detection and management - improved health and morbidity.
      • Identify high risk groups, target intervention programs.
      • Evaluate dx prevention/control
    • Trauma
      • Decrease morbidity/mortality by rapid access to optimal facility.
      • Provide data on all admitted trauma's
      • Improve pre- and hospital care
      • Provide descriptive and analytic epidemiology
      • Program evaluation and management* [Top]
    Registry classifications
    • Hospital registries
      • Primary goal - improve care provided
      • Compare agency morbidity /mortality rates
      • with regional/national statistics
      • Assess need for professional/public education
      • resource allocation
    • Population-based registries
      • A major objective - incidence surveillance:
      • patient and problem
      • Control: screening, treatment, progress
      • Monitoring
      • Research: etiology* [Top]
     
    Components
    • Database
      • Example (248): pt, diagnosis, provider, procedures, treatment, lab, other
    • Monitoring, follow-up
      • passive (submitted reports) case ascertainment active (seek them out) (> reliable, > costly)
    • Evaluation/quality control
    • Data use
    • Confidentiality
    • Resources
      • hardware - data entry, storage capacity
      • software - statistical analysis
      • staffing - knowledge of coding* [Top]
      07/15/00 MACurran & S. Kellum
     
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