Recruitment has started for a dedicated dystonia brain bank at Queen Square Brain Bank in London

Dystonia is one of the few conditions which as yet does not have such a bank. The major benefit of the proposed dedicated brain bank would be to ensure a guaranteed number of dystonic brains available to any researchers. These samples would enable them to investigate the possible causes, problems and abnormalities of dystonia within the brain tissue.

In the absence of more dystonia donations, researchers in the future will not be able to perform the necessary brain tissue investigations that will ultimately be required if anyone is ever likely to identify the cause, treatment or even possible cure for dystonia.

At present, with only a few dystonia brain samples left, we are concerned that dystonia research will decline. This collection project will last at least a couple of years as the team are hoping to secure at least 30 donations in order to ensure that the future of dystonia research is secure. Because, ultimately, without these organs being left for research, there will be no research.

For more information on the Queen Square Brain Bank visit http://www.ucl.ac.uk/ion/departments/molecular/themes/neurodegeneration/brainbank


The use of real time ultrasound to produce clear images of a persons muscular anatomy and facilitate targeted botulinum toxin injections

The Dystonia Society is currently funding a research project at Manchester Metropolitan University, where the team has been developing real time ultrasound. This software would help a clinician to identify the dystonic muscles in cervical dystonia requiring botulinum toxin (BoNT) injections.  At a very basic level, it means that in the future it is possible that if a clinician has a laptop, this software and an ultrasound probe then by placing the probe on the neck, they will be able to see a real time image of the muscles up to five layers deep. Each muscle is identified by a different colour, making it extremely clear to the clinician exactly which muscles they are viewing.

The team has had some success in identifying dystonic muscles just by the image displayed on the screen, with one participant showing active muscle tremor localised deep in the cervical muscles (semispinalis cervicis) on the left side of the image. This explained and corresponded to the head tremor observed in this person with cervical dystonia. The value of this assessment lies in the fact that these muscles were previously not identified and targeted for BoNT injections. This illustrates the potential use of this tool to improve the treatment for this person and many others. Because it is a real time image, the clinician can see the muscles in your neck at that point in time and identify which muscles are being affected by the dystonia or tremor. The injector can be guided into the specific muscles affected by the dystonia, and into those muscles that are deeper which previously may not have been identified as being dystonic or being missed because of not knowing the exact depth and placement of the needle at the point in time of the BoNT being injected. The injector will be able to view the needle as it enters and know precisely where it is, making targeting the affected muscles extremely effective.

Joanne Day, Research and Information officer
[email protected]