Your specialist may be involved in research that you can take part in. Trials may be into medication and therapy for MSA, or may be investigating the diagnostic process and progression of the disease. Occasionally the SMT is approached by researchers to invite the SMT membership to participate in research projects. Provided that the study has ethical approval the SMT will either put an article in SMarT News with contact details, or will be involved in writing invitations to members.
Brain Donation
Brain donation is an important area of neurological research. This is a sensitive subject to discuss for many health professionals as brain donation can only occur after death and this discussion seems at odds with their work to manage symptoms and improve the daily lives of their patients. Karen Shaw, the nurse at the Queen Square Brain Bank for Neurological Disorders who talks to families about brain donation feels that "donation, which may help others in the future, can offer patients and relatives the opportunity to salvage some meaning from an otherwise confusing situation".
Brain donation has enabled the discovery of alpha synuclein (a protein) in the glial inclusion bodies which is peculiar to MSA, and improved the accuracy of diagnosis. Brain donation has also been incorporated (voluntarily) into some clinical research trials to help identify and evaluate any benefit from the treatment to the brain itself.
For a list of Brain Banks in the UK please contact the SMT office.
DNA Donation
Another type of research that members often ask about is genetic research. MSA is not thought to be hereditary; it does not appear to be passed on through family generations. However through the study of genes and DNA, which carry information about our characteristics and body processes, we may be able to unlock some important information about MSA. There are some blood sample DNA banks set up as part of clinical research trials, also some of the Brain Banks may take samples when you register. Most Brain Banks will look at DNA as part of their examination of donated tissue.
For further information contact the SMT office.