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Building a Research Data Repository for Chronic Condition Self-Management Using Harmonized Data.

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Nursing Research
|March 25, 2020
PubMed
Summary
This summary is machine-generated.

Creating nursing research data repositories is advancing. Common Data Elements (CDEs) enabled combining data from seven chronic condition studies, yielding a robust dataset for future research and public sharing.

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Area of Science:

  • Nursing Research
  • Data Science
  • Health Informatics

Background:

  • Developing nursing research data repositories for data synthesis and public sharing is in its nascent stages.
  • Challenges exist in harmonizing data across diverse studies and populations.

Purpose of the Study:

  • To describe the process of utilizing Common Data Elements (CDEs) to construct a data repository for self-management of chronic conditions research.
  • To share lessons learned and provide recommendations for creating and sharing harmonized nursing research data sets.

Main Methods:

  • Defined a set of CDEs for pilot studies involving diverse chronic condition populations.
  • Implemented standardized codebooks and data collection protocols over four years.
  • Combined data from seven pilot studies into a unified research data repository.

Main Results:

  • Individual pilot studies had small sample sizes (18-31 participants).
  • The combined dataset includes 179 participants, enabling analyses not possible with smaller samples alone.
  • The self-management of chronic conditions research data repository will be available for public sharing.

Conclusions:

  • Careful planning and oversight are crucial for applying CDEs across different chronic condition populations.
  • This approach facilitates the creation of combined data sets and research data repositories for public sharing.
  • The developed repository supports advanced analyses and promotes data accessibility in nursing research.