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TBase - an Integrated Electronic Health Record and Research Database for Kidney Transplant Recipients
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From designing minimum data set to developing kidney transplantation registry in Iran.

Ahmad Akhlaghi1, Mostafa Langarizadeh1, Nahid Rahimzadeh2

  • 1Department of Health Information Management, School of Health Management and Information Sciences, Iran University of Medical Sciences, Tehran, Iran.

Journal of Family Medicine and Primary Care
|January 8, 2024
PubMed
Summary

This study designed a minimum data set for a kidney transplantation registry in Iran to improve care for end-stage renal disease patients. The registry aims to enhance data quality and patient management.

Keywords:
End-stage renal diseasekidney transplantationminimum data setregistry

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Area of Science:

  • Health Informatics
  • Public Health
  • Nephrology

Background:

  • Rising global life expectancy and population growth increase chronic diseases like end-stage renal disease (ESRD).
  • Kidney transplantation is crucial for ESRD management, necessitating robust data collection for effective care.
  • Existing registries can inform clinical care effectiveness, cost analysis, and patient outcomes.

Purpose of the Study:

  • To design a minimum data set (MDS) for a kidney transplantation registry in Iran.
  • To improve the quality of care for individuals with end-stage renal disease.
  • To establish a foundation for a web-based national kidney transplantation registry.

Main Methods:

  • A descriptive-applied research approach was employed.
  • The MDS was developed through expert panel meetings involving urology, nephrology, health information management, and medical informatics specialists.
  • Elements of the MDS were discussed and refined based on expert consensus.

Main Results:

  • A kidney transplantation registry framework was defined across eight key axes: purpose, structure, data sources, MDS, classification systems, data processing/reporting, information access, and data quality.
  • Expert validation confirmed the characteristics and tables of the proposed registry framework.
  • The validated framework ensures acceptable data quality parameters.

Conclusions:

  • The designed MDS addresses requirements for a web-based kidney transplantation registry in Iran.
  • Implementation of this registry prototype will facilitate higher-quality data collection for ESRD patients.
  • The registry is expected to improve patient information management, enhance service delivery, and support future research in kidney transplantation.