Genetic Haemochromatosis in the UK

Genetic haemochromatosis (GH) is an inherited condition that leads to the slow build-up of iron levels in the body over many years. If untreated, individuals with this condition go on to develop life-threatening problems such as liver disease, liver cancer, diabetes, and heart disease. Earlier identification and treatment of genetic haemochromatosis (GH) can reduce the risk of these health complications and death. It is thought there are over a million people with GH in the UK. However, most individuals with GH are not diagnosed. There is a lack of up-to-date information to help understand more about this condition and to help improve the identification of people with GH.

This project will use very large databases of patients’ GP health records, linked to hospital records (the information is anonymised, and individual patients are not identifiable). We will first measure how commonly GH occurred in the population over the last 20 years. Secondly, we will measure what different medical problems and outlooks people with GH experience after they have been diagnosed with the condition in primary care.

Haemochromatosis UK, the UK Charity for persons living with genetic haemochromatosis in the UK have been involved in designing these studies from their very inception and will continue to be involved in advising on the approach to analysis and interpreting the results. We will also work with our charity partner (Haemochromatosis UK) to share our study findings with healthcare professionals, patients, and the public. We will also share our findings with other academics through publishing papers and presenting at conferences.

Amount Awarded: £43,852