Liver Disease Registry

Better data for better liver health.

The Liver Disease Registry (LDR) Project developed and piloted a standardized electronic registry and health data dashboard for six priority liver diseases in the Philippines. It brings clinical information into a common framework to support patient monitoring, research, surveillance, and evidence-informed health policy.

Led by the National Telehealth Center at the National Institutes of Health, University of the Philippines Manila, the project combined expert consensus, digital system development, governance planning, and testing in public and private hospital settings. The development and pilot phase ran from January 2024 to December 2025, establishing a foundation for further refinement and wider implementation.

Results · Registry development · Pilot findings · Research · Resources

Results at a glance

Pilot recruitment took place from August to November 2025 at Philippine General Hospital and The Medical City–Ortigas. These results describe the pilot and are not national estimates of disease burden.

Why a liver disease registry?

Liver disease information is often scattered across clinical records, hospital systems, and individual research databases. Differences in documentation and data definitions make it difficult to compare findings, follow disease progression, and use information consistently for research and planning.

The LDR Project responds to these gaps with a shared approach to collecting and managing liver disease data. Its aim is to build a reliable foundation for understanding patient outcomes, identifying care needs, and informing decisions about liver health services.

Conditions covered

The registry covers six priority conditions:

• Hepatitis B
• Hepatitis C
• Metabolic dysfunction-associated steatotic liver disease (MASLD)
• Alcohol-related liver disease (ALD)
• Liver cirrhosis
• Hepatocellular carcinoma (HCC), the most common form of primary liver cancer

The framework captures information across diagnosis, clinical assessment, investigations, treatment, and outcomes, with shared and disease-specific data elements.

How the registry was developed

The architecture provides a basis for interoperability. Connecting the registry with existing hospital systems remains an area for further development, particularly where source records contain unstructured clinical notes.

What we learned from the pilot

Pilot implementation at Philippine General Hospital (PGH) and The Medical City–Ortigas (TMC) tested data collection and registry workflows in different clinical environments. St. Luke’s Medical Center also participated in system beta testing.

Usability and data quality

The terminal report describes System Usability Scale scores of 70.8 and 67.1 out of 100, suggesting broadly average or acceptable usability while identifying opportunities to simplify navigation and data entry.

An initial data quality assessment reviewed 112 required variables across 47 randomly selected PGH patient records, comparing registry entries with the original electronic medical records:

• 77.4% data accuracy: entries matched, or acceptably matched, the source record.
• 62.1% data completeness: required fields contained valid entries rather than being blank or recorded as unknown.

All required data elements had corresponding fields in the system. The remaining challenge was ensuring that the information was documented in clinical records and entered consistently into the registry.

Priorities for better implementation

• Keep the core dataset practical. Prioritize essential information that can be collected reliably during routine care.
• Support clinicians with trained encoders. Clinically trained research assistants helped interpret records and enter data, reducing the additional workload on physicians.
• Strengthen clinical documentation. Consistent definitions and clearer source records are essential to improving data quality.
• Improve integration with hospital systems. Structured data exchange could reduce manual entry; automated extraction from clinical notes requires further development and evaluation.
• Plan governance and financing alongside the technology. Expansion requires agreed responsibilities, appropriate data-sharing arrangements, workforce support, and sustained resources.

Governance and responsible data use

The Registry Charter provides a framework for governance and oversight, ethical data collection, quality assurance, controlled access, research collaboration, and data sharing. It also addresses stewardship and the resources needed to sustain the registry.

Pilot implementation followed institutional ethics and consent requirements. Wider participation will require appropriate institutional agreements and governance arrangements, with clear responsibilities for protecting patient information and reviewing access to data.