This information helps researchers to build a broad picture of why MND happens to some people and not others, and can be used to audit care standards across different health boards and local authorities.
The more people that sign up to the register, the better the results we can obtain. You can register your details online or ask your MND Clinical Specialist for details. You may also be approached at an MND Clinic and asked if you would like to be added to the register. The register is run through a project called CARE-MND, which is a national platform empowering people living with MND in Scotland to directly influence the provision of clinical care and research.
The Scottish MND Register also allows people with MND to:
We are funding a research study looking at the DNA make-up of MND in Scotland, and want to encourage people with MND to donate a sample of their blood for this study. Although blood is a great source of DNA, if you are afraid of needles you can also donate your saliva.
Please note that samples donated for research are anonymised, so no personal information is attached to them. This means genetic information gained from your sample will not be made known to you or your family.
If you would like the potential to have personal genetic information made available to yourself or others in your family you should consider giving a ‘Clinical Sample’. Clinical samples are identified with personal information before being securely stored by the NHS and can be of great value should other members of your family develop MND or certain other serious conditions in the future. You can speak to your Scottish MND Clinical Specialist about this.
For more information about the Scottish MND Register, please contact:
Judith Newton, National Nursing Lead for MND/Consultant Nurse