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Coding practice in national and regional kidney biopsy registries
Amélie Dendooven1,2, Han Peetermans3, Mark Helbert3
1Ghent University Hospital, Ghent, Belgium. amelie.dendooven@uzgent.be.
BMC Nephrology
|May 25, 2021
Summary
Kidney biopsy registries lack standardized coding, hindering global data sharing. Implementing a uniform coding system is crucial for advancing kidney disease research and policy.
Area of Science:
- Nephrology
- Medical Informatics
- Health Policy
Background:
- Kidney biopsy registries are vital for research, education, and health policy.
- Data comparison, aggregation, and exchange rely heavily on standardized diagnosis coding.
- Current coding practices in kidney disease registries present significant challenges.
Purpose of the Study:
- To provide an overview of existing kidney biopsy registries worldwide.
- To investigate the methods used by these registries for coding kidney diseases.
- To identify areas for improvement in current coding practices.
Main Methods:
- A literature search identified global kidney biopsy registries.
- Data were supplemented with personal communications and registry websites.
- A questionnaire assessed registry age, scope, coding methods, international terminology mapping, and identified problems.
Main Results:
- Sixteen registries were identified, mostly in Europe and Asia; 11 were over 10 years old.
- Proprietary coding systems are prevalent (12/16 registries).
- Few registries map to international standards like SNOMED CT; lack of maintenance is a common issue.
Conclusions:
- Significant gaps exist in global kidney biopsy registry coverage.
- Limited adoption of international coding systems impedes data interoperability.
- A unified, standardized coding system is essential to maximize the value of kidney biopsy registries.
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