INVOLVEMENT OPPORTUNITY - Haemochromatosis Research Project (UK)

[BritishLiverTrust1]

Do you have haemochromatosis and want to help make the way it is diagnosed and treated in the UK better for patients?

The British Liver Trust are facilitating several virtual focus groups on the NIHR Fellowship research of Dr Janice Atkins about enabling timely diagnosis of hereditary haemochromatosis (HH).

This is the most common inherited disease in northern Europeans and can result in serious diseases later in life. This is especially a problem in men; the risks are thought to be less in women due to protection of iron-overload by menstrual blood loss.

HH is easy to diagnose with a simple blood test and can be safely treated by the removal of blood to lower iron levels. Many UK patients are progressing to serious disease before being diagnosed. There is a major lost opportunity to prevent the complications of iron overload, despite the ease of testing and treatment.

The overall aims of this research are to answer some key remaining questions about the effect of the haemochromatosis faulty genes in men and women; to understand the nature of current service problems leading to late diagnosis in men and women; and to estimate how much excess disease and costs to the NHS could be avoided by earlier diagnosis or screening.

Can I take part?

Yes, if you are over 18 years old, live in the UK, and have a diagnosis of haemochromatosis. You don’t need any previous experience of research.

What do I need to do?

The first virtual focus group will take place on Zoom on Monday, 19th February from 12pm to 2pm We will ask you to share your experiences and provide feedback on the research to date.

You will be given vouchers in payment for your time and contribution. You will also have the opportunity to be involved in two future focus groups.

I am interested, what should I do now?

To book on please email: [e-mail]