We've been working closely with the staff and students at Cardiff University studying genetics over recent months. The first fruits of that collaboration are two research projects examining the experiences of people who undergo genetic testing for GH.

The first project starts this month to explore the experiences of diagnostic genetic testing for people with GH. The aims of this study are to examine (i) recent experiences of genetic diagnosis of GH (ii) how well-prepared participants feel for genetic testing for GH & (iii) the consequences of a genetic diagnosis of GH for an individual and their family.

The second study will examine the psychological impacts of cascade testing for asymptomatic/presymptomatic family members aged 18 and over who have a relative affected by GH.

Our collaboration with Cardiff University builds upon our earlier work with researchers from University of Swansea and University of Birmingham.

We hope to encourage and inspire early career-stage genetics researchers to take a keener interest in our condition. Plans are already in place for a second set of research projects in 2025-2026.

We're excited to support this research. HUK members will have an opportunity to get involved in this research over the coming weeks - look out for the emails inviting you to join the studies!