Development and maintenance of a community-based hepatitis C registry

Area of Science:

• Public Health
• Epidemiology
• Health Informatics

Background:

• Hepatitis C (HCV) poses a significant public health challenge, necessitating robust methods for patient identification and management.
• Effective clinical care and epidemiological studies depend on comprehensive registries of diagnosed individuals.

Purpose of the Study:

• To develop and test a model for creating community-based registries of patients diagnosed with hepatitis C.
• To facilitate improved clinical care and support epidemiologic research for hepatitis C.

Main Methods:

• A geographically defined, population-based cohort study utilizing data from the Rochester Epidemiology Project (REP) from 1990-1999.
• Supplementation of diagnostic data with Olmsted County laboratory records for hepatitis C testing.
• Medical record review for confirmation of diagnoses and testing of proposed registry data elements.

Main Results:

• Identified 355 subjects with hepatitis C in a population of 130,000, with 87% from diagnostic summaries and 13% from laboratory data.
• Confirmed the importance of both diagnostic and laboratory databases for comprehensive subject identification.
• Found that most required data elements were available in medical records, with minimal refusal for authorization.

Conclusions:

• Integrated use of medical visit diagnostic summaries and laboratory databases is essential for identifying hepatitis C patients.
• The developed model demonstrates feasibility for establishing hepatitis C registries.
• Minimal patient refusal suggests acceptance of data collection for research purposes.