• In HD research as well as in research on other neurodegenerative diseases there is an increasing need for human tissues from brain and peripheral organs and hence tissue banking. Studies in transgenic animal model of HD resulted in rapidly growing knowledge about the altered biochemistry of the HD brain and of peripheral organs; these results need to be systematically compared to observations in humans affected with HD. A prospectively planned collection of post-mortem tissues (both brain and peripheral organs) of consenting patients suffering from HD is therefore an important unmet need.

• With the advent of novel molecular biological technologies such as mass spectrometry, expression profiling, proteomics and (functional) genomics and their simplified application in pathology and neuropathology, it is timely to set standards concerning the quality of human post-mortem tissues to be used for the application of these technologies.

• Prospective longitudinal observational studies in HD like REGISTRY will eventually allow to correlate neuropathological findings with well-characterized clinical phenotypes and will assist in the validation of biomarkers tracking the clinical course of HD.

• Programs to facilitate the donation of post-mortem tissues and for the state-of-the-art sampling, processing and storage are underway at an European level (e.g. BrainNet-Europe.org)

This working group should assist Brain Banking for HD by

1. liaising with European Networks like BrainNet-Europe to overcame the practical obstacles in realising donation of post-mortem tissues
2. developing practical protocols for sending fresh donated tissues for expert dissection and asservation (e.g. similar to the procedures developed by the Columbia Brain Bank, New York, NY, enclosed)
3. preparing a number of dissection protocols to accommodate the requirements of a range of studies allowing e.g. biochemical and stereological read-outs
4. organizing rules and procedures for tissue access (see e.g. the paperwork used by the  Columbia Brain Bank New York, NY).

In addition, this working group should attempt to survey the availability and the access to HD tissues stored a various institutions as a baseline for proposing defined research studies.

Lastly, the working group should discuss and propose – if appropriate based on the available tissues – a systematic, cooperative fundable study of certain neuropathological features in HD brains, e.g. a systematic survey of the distribution (density and number) of nuclear inclusions throughout the brain.

TBA

, Spain