Liver Disease Registry in Wales to drive up standards of care

Posted on: 29th July 2019

The new liver disease Registry in Wales has been launched and is now actively collecting data across Wales. The Registry has been created as part of the Liver Disease Delivery Plan for Wales to inform effective provision of Welsh hepatology services.

The development of this liver disease registry in Wales is a key part of the implementation plan and will inform the effective provision of hepatology services within Wales driving up standards of care. The Wales Liver Registry will collect important data so that scientists, researchers and clinicians truly understand the burden of liver disease in Wales and can effectively plan services and undertake research.

Disease registries play an important part in improving health outcomes. They also reduce the costs of health care. Through the use of such registries, health-care providers can compare, identify, and adopt best practices for patients.

Early results from the new Liver Registry in Wales suggests that there has been a 2.5 fold increase in liver disease in less than 20 years.

(Graph courtesy of Wales Liver Disease Registry)

Pam Healy, Chief Executive of the British Liver Trust said,

“The British Liver Trust campaigned for a Liver Registry in Wales to be created and we are delighted that this project has come to fruition.

We have seen the introduction of disease registries associated with many notable successes across the UK, including improvements in management of cardiovascular disease, stroke, and cancer. The British Liver Trust looks forward to playing a key role in Wales, supporting clinicians and Government to use this data to drive similar improvements in liver disease. Wales is leading the way with this initiative and we would like to see the introduction of a UK wide liver registry so that data can be compared.”

The first iteration of the registry captures all coded diagnoses of liver disease of inpatient and day case activity and liver disease associated mortality in Wales between 2001 and 2016. 
Data is anonymised and maintained under strict regulation to fully protect the identities and clinical information of all individuals involved.

The team developing the Registry is prospectively collecting data and are applying cutting edge machine learning analysis as an ongoing collaboration between hepatologists, Public Health Wales, NHS Wales Informatics Service and Cardiff University researchers.

Dr Tom Pembroke who is leading work on the Registry said “The Wales Liver Registry will enable us to identify those most at risk of developing the serious complications of liver disease as early as possible. Understanding this fundamental information for patients in Wales will enable us target services and resources efficiently to improve outcomes through therapies, screening and patient support.”

Read more about the first results from the Wales Registry on the team's EASL poster: Changing patterns of liver disease in Wales: first results from the Wales Liver Disease Registry