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Data collection, maintenance, and analysis for rheumatic disease research.

Frederick Wolfe1, Kaleb Michaud

  • 1National Data Bank for Rheumatic Diseases, Arthritis Research Center Foundation, 1035 North Emporia, Suite 230, Wichita, KS 67214, USA. fwolfe@arthritis-research.org

Rheumatic Diseases Clinics of North America
|October 19, 2004
PubMed
Summary

Clinicians and academics are building rheumatic disease outcomes databases. This article shares concepts, methods, and challenges from the US National Data Bank for Rheumatic Diseases experience.

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Area of Science:

  • Rheumatology
  • Medical Informatics
  • Health Data Management

Background:

  • Increasing availability of powerful computing resources.
  • Growing interest in constructing rheumatic disease outcomes databases among clinicians and academics.
  • Need for standardized approaches to database development and analysis.

Purpose of the Study:

  • To describe concepts, methods, and problems in constructing and analyzing rheumatic disease outcomes databases.
  • To provide insights based on the experience of a national data bank.
  • To guide future database development efforts in rheumatology.

Main Methods:

  • Review of concepts and methodologies for database construction.
  • Analysis of challenges encountered in database development and maintenance.

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  • Case study approach using the US National Data Bank for Rheumatic Diseases.

    • Main Results:

    • Identification of key concepts in rheumatic disease database construction.
    • Elucidation of common methods employed in database analysis.
    • Discussion of practical problems and potential solutions in managing such databases.

    Conclusions:

    • Successful construction and analysis of rheumatic disease databases are feasible with careful planning.
    • The experience of the US National Data Bank offers valuable lessons for similar initiatives.
    • Standardized methodologies and addressing potential challenges are crucial for effective outcomes databases.