The MND Scotland Register provides a national service of support and coordination for all research activity in Scotland for people with MND. There are increasing levels of involvement and everyone, soon after diagnosis, is given the opportunity by their care advisors to decide how much they wish to get involved:
- 1st level – you are happy that Laura Stephenson, our MND Scotland funded Research Nurse, is made aware of you and you are happy for Laura and/or research team members to look at your medical records. Laura and the research team members are contracted members of staff for the NHS, at no point is your confidentiality at risk.
- 2nd level – you are happy to meet Laura at your next clinic appointment or at your home and donate a sample of your DNA. This donation is not part of NHS care and is completely anonymous, meaning no results are received. The sample is then used by genetic researchers seeking to find new MND genes or striving to explain why MND affects some people in different ways or in different parts of the body.
- 3rd level – you are happy for Laura to send you details about research studies as they come along (you don’t have to decide at this point whether or not you want to take part).
- 4th level – you are happy for other researchers to discuss their MND studies with you. These approaches would be coordinated by Laura, your contact details would never be given out to other researchers directly. At each point you are under no obligation to take part in any study and if you do, you can withdraw at any time without giving a reason and it won’t affect your medical care. If you change your mind about hearing about any research at all, just let Laura know and you will not be sent any further information.
If you wish to join the Register or hear more about the research taking place in Scotland, the UK and internationally, please contact Laura on 0131 242 7985 or email either laura [dot] stephenson [at] ed [dot] ac [dot] uk or info [at] smart-mnd [dot] org.