Opportunities to become involved in DeNDRoN

One of the aims of DeNDRoN is to involve people living with MND in the planning and decision making processes around clinical research.
As DeNDRoN is a relatively new organisation, ways of involving people with MND are still being established.

The aims is for people to become involved in a patient public involvement role by joining a committee of steering group, or by supporting the activities of their Local Research Network. The seven Local Research Networks (LRNs) cover large areas of England, however, there are areas that are not covered by the LRNs.

Neurodem Cymru is working in close collaboration with DeNDRoN to support clinical research in Wales.

What is public patient involvement (PPI)?

The principle of public patient involvement (PPI) is to encourage a partnership between patients and the wider public and researchers to improve the quality and relevance of clinical research. These include involving patients and the public in deciding what clinical research should be conducted and how the studies should be designed.

What should I know before I volunteer?

Some of the committees and steering groups are in the process of being established, so it may not be possible to become involved straight away. Below are some questions that you might find it helpful to ask before you agree to participate:
  • Do you have a specific role in mind?
  • When is the next meeting? 
  • How often are the meetings? 
  • How do the format of the meetings fit in with my needs (is it a teleconference or a face to face meeting, where is it?) 
  • Is it necessary to do any background reading, preparation or reporting between meetings? 
  • How regularly will you keep me informed? 
  • What happens if I wish to stop? 

I am interested in PPI, what should I do next?

For more information, please contact Terry McGrath, PPI Co-ordinator for DeNDRoN or the Local Research Networks Managers in your area.

Joining in the Local Research Networks

Most of the seven Local Research Networks around the country are now up and running. From time to time we are made aware of events that they are running and we will include them here.