MND Research List

If you are interested in helping researchers, by taking part in future MND research, then join our MND Research List today.

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 creating a list of people with MND who are interested in taking part in research. 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 MND Research List, 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.

Who can join the MND Research 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 MND Research List.

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 the MND Research List?

Read our further information document to find out more about the List. If you have any questions, are eligible and are interested in joining, then please contact the Research Development team by emailing research@mndassociation.org or phone 01604 611 880

There is no guarantee that by being listed on our MND research List 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.

Research newsletter

Our ‘What’s happening in MND research?’ newsletter is a quarterly communication with people living with MND who are interested in getting involved in MND research. The newsletter is published at quarterly intervals and is sent to people on our MND Research list. You can read the latest issue online here.

Please note: If you are already on our MND Research list, but do not wish to receive the newsletter, please contact the Research Development team on 01604 611 880 orresearch@mndassociation.org