Developing a community-centred approach for the banking of early-stage HD brains [Conference Abstract]

Drew, Cheney ORCID: https://orcid.org/0000-0002-4397-6252, Giorgini, Flaviano, Kolodziej, Kinga, Warner, Tom, Wild, Ed and Rosser, Anne ORCID: https://orcid.org/0000-0002-4716-4753 2026. Developing a community-centred approach for the banking of early-stage HD brains [Conference Abstract]. Journal of Neurology, Neurosurgery and Psychiatry 97 (Supp 2) , A192. 10.1136/jnnp-2026-ehdn.414

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Abstract

Background: Access to HD post-mortem (PM) brain tissue is limited, with most PM samples representing end-stage disease. Brains from the earliest disease stages (HD-ISS 0 /1) are particularly rare. Thus, the important earliest pathological changes in HD brains are poorly characterised, limiting our understanding of how to develop therapies to prevent disease onset and slow decline. The Early-Brain Banking Task Force aims to establish a framework to support the collection and utilisation of early-stage HD PM Brains for translational research. Aims: Current activities of the task force aim to: 1. Understand current landscape of HD brain banking in Europe. 2. Facilitate engagement of the HD community to recognise their perspectives and needs in relation to early-stage brain collection Methods: 1. We will catalogue HD PM brain collections across Europe and detail existing gaps in currently available samples. This will align with and complement the HD-BRIDGE initiative, which aims to harmonise collection, preservation and pathological analyses of HD PM brains. 2. Community engagement will involve co-creation of a benchmarking survey to document current attitudes towards brain banking within the HD community. Subsequent iterative workshops will use elicitation techniques to engage participant views on brain donation, exploring acceptability and key ethical and logistical challenges. Outcomes: We will create a database of available PM samples across Europe to align with knowledge of US-based collections. Additionally, we will co-create outputs for the HD community to provide tailored information, which will underpin the development of an acceptable protocol for collection of early-stage PM HD brains.

Item Type:	Short Communication
Date Type:	Publication
Status:	Published
Schools:	Schools > Medicine Research Institutes & Centres > Centre for Trials Research (CNTRR)
Publisher:	BMJ Publishing Group
ISSN:	0022-3050
Last Modified:	28 Oct 2026 12:16
URI:	https://orca.cardiff.ac.uk/id/eprint/190498

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