As part of MND Awareness Month, here is an update on the National MND Register, a resource supported by MND Scotland and hosted by the Euan MacDonald Centre.
In order for Scotland to offer MND patients the same, or better, care as measured against other countries and UK regions, it is necessary to document and evaluate care provision. This is done through the MND Scotland (MNDS) National MND Register.
With the patients’ consent, the Register captures demographic and medical / care information in a standard and internationally agreed format.
Ensuring equity of care and opportunity
Working against nationally agreed guidelines, the MNDS Register allows measurement of the equity of care across the 14 Health Boards in Scotland and thus is an important resource in driving up standards.
In partnership with the Euan MacDonald Centre, the Register also acts as a platform to offer participation in research projects for people living with MND. Examples of clinical research projects include studies of cognition, language, genetics, and laboratory research projects around disease modelling using stem cells donated by MND patients.
The Register is coordinated by an MNDS-funded research nurse. The research nurse attends all Scottish regional specialist MND clinics — as well as visiting patients at home or speaking to them by videoconferencing or telephone — and is therefore able to ensure true national reach.
The research nurse has time to answer questions and make all patients aware of the research activity that goes on within Scotland, facilitating their involvement if they wish.
An invaluable resource for research
By bringing together measurement and benchmarking of patient care with patient-centred research, the MNDS Register aims to provide Scotland’s MND community with internationally competitive care and research.
The Register enables researchers to build up an ever-more accurate picture of MND in Scotland, answering questions such as:
- How common is this condition?
- Is the incidence increasing or decreasing?
- Are there particular geographic “hot-spots”?
- What care interventions are most effective?
Some patients on the Register agree to provide a blood sample from which DNA can be extracted. DNA samples can be used for genetic studies, looking for particular genetic changes that occur more commonly in people with MND than in the general population.
Importantly, through the Register, the researchers have access to a pool of people who have agreed to be contacted if volunteers are needed for a clinical trial of a new treatment. Of course, being on the Register does not mean that anybody is obliged to take part in research: informed consent is always obtained independently for each study.
Nearly 450 people with MND have signed-up to the MNDS Register since 2010, and 300 people have provided a DNA sample.
If you would like to find out more about the Register or how to join, please email firstname.lastname@example.org.