Exploring the feasibility of establishing a disease-specific post-mortem tissue bank in the UK: a case study in ME/CFS, 2010, Lacerda et al

An old thread, but the idea of a post-mortem biobank is often discussed on the forum, and this study was linked in one such discussion.

https://jcp.bmj.com/content/63/11/1032
Not open-access
Sci-hub link: https://sci-hub.wf/10.1136/jcp.2010.082032

Abstract
Background
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a condition, the aetiology of which remains controversial, and there is still no consensus on its nature and determination. It has rarely been studied in post-mortem examinations, despite increasing evidence of abnormalities from neuroimaging studies.

Aim
To ascertain the feasibility of developing a national post-mortem ME/CFS tissue bank in the UK, to enhance studies on aetiology and pathogenesis, including cell and tissue abnormalities associated with the condition.

Methods
The case study was carried out combining qualitative methods, ie, key informant interviews, focus group discussions with people with ME/CFS, and a workshop with experts in ME/CFS or in tissue banking.

Results and conclusions
The study results suggest that the establishment of the post-mortem ME/CFS tissue bank is both desirable and feasible, and would be acceptable to the possible tissue donors, provided that some issues were explicitly addressed.

Other threads on tissue donation
UK brain banks that accept ME/CFS donors
Considerations in establishing a post-mortem brain and tissue bank for the study of ME/CFS: a proposed protocol, 2014, Nacul et al
Open ME Association: The UK ME/CFS Post Mortem Tissue Bank and Tissue Donation
Post mortem tissue donation and autopsies (Members only)

 

It's brief paper.
Some interesting bits: