Aims

We have established a core group of motivated individuals to steer the project and welcome new members – please get in touch with us!

In the next year, we plan to develop a larger group of interested people representing a variety of stakeholder groups, including people with HD, family members, advocacy groups, researchers, clinicians, industry, and others. We are working with a drug access consultancy to identify readiness gaps for when the first treatments are licensed. We are also pursuing data analysis projects relevant to HEATED (see below).

Projects

Previous projects

• Mini-epidemiology seminar (2020)
• Systematic review of EQ-5D validity in HD (2024)
• Paper linking data-driven staging models to holistic economic modelling (2024)

Ongoing projects

• Gap analysis to examine missing information related to drug access with an assembly presentation at the EHDN Clinical Research Congress 2026 to share updates (with JG Consulting)
• Systematic review of staging systems in relation to health economics in HD (grant applied for with Lancaster University, UK)
• Validation of quality of life measures from placebo arms of clinical trials.
• Planning and delivery of a multi-stakeholder networking meeting at the EHDN Clinical Research Congress 2026

Contact

 

 

 
 
 

last update 15 May 2026