Researcher: Laura Stephenson
The Scottish MND Register was set up to collect and store statistical information about MND patients in Scotland. The information can then be used to audit against MND care standards and compare geographical areas. The register also allows people to express an interest in taking part in future research projects and to assist with the creation of a national MND bioresource by donating their DNA.
Laura Stephenson, MND Scotland Research Nurse and Danielle Leighton, MND Clinical Research Fellow, have been collecting important information from people affected by MND across Scotland, including:
- Information about the illness
- Other health issues
- Environmental factors which could be a trigger for the illness
This information is collected and stored in the Scottish MND Register and then made available to researchers to analyse. From this information it is possible to calculate if the number of people diagnosed with MND is increasing and how that compares to other countries.
The DNA Bank is another key strand of the Scottish MND Register. The last decade has witnessed a revolution in our understanding of the genetics of MND. Danielle and Laura have been asking patients if they would like to donate saliva or blood to the DNA Bank for research purposes. The DNA bank allows MND researchers to look for links between the disease and people’s genetic make-up, potentially identifying new genes that cause or modify the disease course.
Why is this important?
It is becoming clear that awareness of genetic abnormalities is vital to our understanding of MND. To assess the significance of these findings, it is crucial to see how these genetic abnormalities relate to each individual’s symptoms. By studying this, we hope to be able to identify genetic markers which are important in our population in Scotland. Through this process, we hope to reduce time to diagnosis, predict prognosis and deliver better care.
The more people that sign up to go on the register, the better the results that we can obtain. If you wish to join the register you can now do this online or for more information on the project please contact:
Laura Stephenson, MND Scotland Research Nurse
laura [dot] stephenson [at] ed [dot] ac [dot] uk
0131 242 7985