Liver Research Cymru

Wales has the highest prevalence of obesity and diabetes in Europe and the number of liver disease diagnoses has risen 3 fold in the last 20-years driven by a 10 fold increase in fatty liver disease. The Liver Research Cymru network will use data of all Welsh people to identify factors associated with disease prevalence and its impact on coastal resorts, rural areas, inner cities and post-industrial communities.

Liver Research Cymru is a new research partnership connecting the clinical Liver Disease Implementation Group (LDIG) to existing research infrastructure in Wales. The LDIG was established in 2015 and is a collaborative network drawing together hepatologists, public health microbiology/infectious diseases consultants and specialist nurses which aims to improve outcomes for people living with liver disease in Wales.

Development of research is a key strand of the national strategy. We aim to establish a sustainable research partnership through 3 inter-related work packages: 1) Building the research community, 2) Connecting & Understanding the data, and 3) Prioritising & Designing Studies.

In work package (WP) 1 we will build on the strengths of the LDIG clinical network to develop new research collaborations with research methodology co-applicants within Cardiff & Swansea Universities. Senior researchers will provide mentorship to ensure that strong foundations are laid for a sustainable data driven research programme.

The LDIG has established a Liver Disease Registry. The novel methodology, defining aetiology and stage of liver diseases, has been established from all routinely coded data (inpatient, day case and death certificates) from 1999 to date. In WP 2 the Registry methodology will be applied to the SAIL Databank to better understand primary care diagnoses and risk factors associated with liver disease.

The SAIL Databank contains health and social care data and is one of the richest anonymised, individual-level population scale Trusted Research Environments in the world. This will enable complete capture of diagnoses of liver diseases at an earlier stage of presentation and link associated risk factors into a research ready data asset (RRDA).

To assess the utility and scope of the RRDA we will undertake analyses to development high quality liver disease research:

1) Describe features associated with liver disease to better understand who is at greatest risk of developing liver disease and related adverse outcomes.

2) Assess the ability to evaluate clinical pathways. The recent staggered introduction of the All Wales abnormal LFT pathway will provide the basis for understanding the utility of the RRDA to evaluate the clinical and health economic implications of the pathway. 3) Develop a framework to assess time to diagnosis and disease progression.

In WP 3 we shall bring together the collaborative network (WP 1) to review the data developed in WP 2 to prioritise and design studies focused upon early diagnosis and health economics. This will place us in a highly competitive position to generate research council funding to deliver liver disease research relevant to Wales and the UK.

In summary the Liver Research Cymru will form a new collaborative network bringing together LDIG, established methodological expertise and a patient advisory group and utilise the SAIL Databank to prepare and pilot the potential of an RRDA to develop high quality research proposals for the NIHR.