Register your interest to get involved with MND research

We know that there is frustration at the lack of research that people with MND can take part in and we are looking to change this.

We are starting to create a list of people with MND who are interested in taking part in research. This is also known as a patient register. Inclusion in this list is optional and does not guarantee that you will be included in future research projects.

Please note: Very few researchers will be looking for people to take part in clinical trials of potential new treatments. If you join the register, you are most likely to be invited to participate in studies that aim to improve understanding of the disease or generate evidence to help raise standards of care. Whilst all studies will have received the appropriate ethical approval, many will be funded by organisations other than the MND Association.

Your details will not be passed on to researchers. Our list however, will enable us, DeNDRoN in conjunction with the MND Association, to identify suitable participants if we are approached by approved researchers looking for specific people to take part in their work. If you are suitable, we will contact you with details of the study, including who to contact if you are interested in participating.

 

This list will help researchers to recruit people with MND across England, Wales and Northern Ireland, particularly when they have complex inclusion criteria and there are not enough suitable patient numbers from the research project’s local area.

Who can join the list?

If you are living in England, Wales or Northern Ireland with a diagnosis of any form of MND including ALS, PLS and PMA, then you are eligible to join our list regardless of whether you are a member of the MND Association.

However, if you are not a member of the MND Association and do not wish to be, then consenting to be part of this list will also mean that you will receive occasional mailings from us which will not be related to our patient register.


Would I need to provide you with my personal details?

Yes, you will need to provide us with your personal details as well as your consent to join the list. These details will allow us to contact people who we think may be eligible to participate in research studies. The more information you can provide us with, the more likely we are to find a study that is relevant to you.

All personal details will remain confidential within the MND Association and will not be shared with any other organisations.


How can I join?

If you are eligible and are interested in joining the register then please contact Janet Bloor at janet.bloor@mndassociation.org or phone 01604 611827.


Any questions?

If you have MND and have any questions then please contact the research development team at research@mndassociation.org, or phone 01604 611880.


There is no guarantee that by being listed on our patient register you will be able to take part in research. If we do contact you with details of a project that we believe you may be eligible for, it is important to bear in mind that you might not meet all criteria for inclusion.