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Taking part in Motor Neurone Disease research

 

Contents

Motor Neurone disease

Taking part and getting involved in Motor Neurone Disease research

If you are a patient, carer, or perhaps a member of public with an interest in Motor Neurone Disease (MND), you can help research. We are keen to involve you in the MND research that is developing and ongoing in the United Kingdom. You can get involved by registering your interest in becoming involved in MND clinical trials.

Why we need you to register

Working in collaboration with the Motor Neurone Disease Association (MNDA), we have created a method for individuals affected by MND to identify themselves as keen to participate in research. This register enables researchers in conjunction with the MNDA to identify suitable participants for approved research across England, Wales and Northern Ireland.

People with MND (PwMND) can indicate their interest to participate in research and provide information which will allow a basic search to review eligible criteria for research studies. Inclusion in this is optional and does not guarantee that you will be included in future research projects.

About the MND Research List

The aim of the MND Research List is to create a list of people with MND who are interested in taking part in research. People with a diagnosis of any form of MND (including ALS, PLS, PMA) are eligible to join the patient record of interest in research and are asked to provide the following details which will aid researchers to carry out a basic search to review eligibility criteria for research studies:

  • Name
  • Address
  • Phone/email
  • Age
  • Gender
  • Date symptoms started
  • Date of Diagnosis
  • Type of Diagnosis (ALS, PB, PLS, PMA, familial, sporadic, etc)

If you are interested in getting involved in joining the MND Research List  please go to the MND Association website for more details.

Other ways to get involved

If you are interested in influencing MND research, you can help shape clinical research by becoming more actively involved and having a say. We need individuals with direct or indirect knowledge about MND to work with researchers, professionals and clinicians (e.g. doctors, nurses) to help ensure clinical research studies reflect patients needs and priorities. This is essential to ensure that studies are more ‘patient friendly’ and work better when they are underway in the NHS.

We are keen to ensure that MND research is driven by patient and carer priorities and that ongoing research is carried out in a manner which is as acceptable as possible for maintaining a quality of life for the individuals involved.

We are keen to have input from patients, carers and members of the public who want to influence research, assist with the development of new studies and assist researchers to review research that is ongoing. If you are interested please contact research@mndassociation.org

If you live within Yorkshire you can become involved with the Sheffield MND Research Advisory Group which is a patient, carer and public involvement group set up specifically to assist researchers with developing and reviewing research studies.