Aims
Due to the relative rarity of Huntington’s disease (HD), access to HD post-mortem brain tissue is limited, especially so in the case of brains from individuals at early stages of disease or prior to onset of motor symptoms (e.g. premanifest HD). Thus, the earliest pathological changes in HD brain pathology are poorly characterised. Meanwhile, there is growing interest in early changes in HD with the recent adoption of the HD Integrated Staging System (HD-ISS), with a desire to link early brain pathology to clinical measures and biomarkers. Access to post-mortem tissue from individuals who are asymptomatic or in the early stages of HD is critical to understanding how HD develops, and thus to identifying optimal ways to target disease prior to irreversible damage.
This problem is compounded by our poor collective knowledge of what brains are stored where across collections in Europe. The lack of a systematic coordinated charting of existing materials will help to provide better access to those already in existence, and will be essential to efficient distribution of any post-mortem materials collected moving forwards.
Therefore, the central aims of this task force are to increase the number of early-stage HD brains available for research and to develop a database of the available brain resources already available across Europe.
Projects
Planned projects
- Mapping of existing HD samples and associated clinical data in brain banks and research facilities across Europe.
- Coordinate Public and Patient and Public Involvement and Engagement (PPIE) activities to increase awareness of the importance of brain banking in the HD community across stages of disease and age of individuals and understand barriers and facilitators to brain donation.
- Develop patient-centred protocol for the collection of postmortem materials from gene positive individuals with no symptoms or early stage HD.
Contact
last update 24 September 2025