DRIG information

written by Marc van Grieken

 

The RSN – a UK wide Research Support Network

The Research Support Network within Parkinson’s UK brings together people driven to help find a cure and better treatments for Parkinson’s. People join the Research Support Network to learn more about ongoing and new research, and also have potential opportunities to participate in and help shape Parkinson’s research.

The key role of the Research Support Network is to:

  • Increase awareness and understanding of research
  • Encourage participation in research
  • Encourage and support patient and public involvement in shaping research

Dundee Research Interest Group

The Dundee Research Interest Group was established on the 25th January 2018 following two meetings with a range of people with an active interest in Parkinson’s research.

The role of the group is to establish a wider-reaching local activity base for the Research Support Network.

DRIG has a steering group responsible for overall program and direction of the group and an executive group responsible for implementing the program set by the steering group. This might include helping to organise activities and events more locally. They will have close links to their local Area Development Managers (ADM), Volunteer Coordinators (VC), and the newly formed Local Development Teams (LDT).

AIMS of DRIG

The preparation meetings confirmed themes for DRIG revolving around ‘communication’,  ‘providing information and raising understanding’ and ‘participation’.

Communication:
  • Raising the profile of Parkinson’s research – for example by means of a website, facebook page
  • Raising awareness of Parkinson’s (sharing experience by those affected by Parkinsons)
  • Providing a forum that enables discussion
Provide information and raise understanding and to learn more about:
  • Parkinson’s  – how to manage the symptoms, dystonia, sleep loss, etc?
  • how the gut affects Parkinson’s, how it affects the brain, how diet affects the gut, etc?
  • why Parkinson’s is so different from one person to the next?
  • Medication & Treatments – now and in the future, new drugs, new treatments, generic drugs, etc
  • Research – what can and can’t be done, the limitations of money, etc
Participation
  • To find out more about clinical trials and how to participate.
  • How can we help?
  • Helping researchers to shape research – collaborative research projects

Steering Group Membership

  • The Steering Group comprises of people with Parkinson’s (PwP) or family members and professionals who will decide, amend or add plans for the group for each year.
  • The Steering Group meets at least every six months.
  • Each Group member will be recognised as a volunteer with the Parkinson’s UK Research Team so that support for their role is ensured from the RSN Manager and the Parkinson’s UK Volunteering team. The tenure is ideally for a minimum of 2 years but of course dependent on the interest of each member.
  • The Steering Group meetings will be open for new people to attend if interested in joining the group.
  • The Steering Group will arrange annual or smaller regular events or open meetings, where larger numbers of people can attend to hear about the group’s activities and also hear from local researchers about their work.

Support and Communication

  • The Steering Group will be supported by the RSN Manager, the Volunteering Team and their local Area Development Manager.
  • The Steering Group will be responsible for setting annual plans and agreeing time-frames for achieving them. These should be reviewed frequently to ensure that momentum is being maintained, objectives are being met and new ideas are explored. Also planned feedback, impact, evaluation will be arranged with the RSN Manager and ADM to establish a clear picture of what is going well or what may need amending.
  • The RSN Manager will be updated with progress from the Steering Group and shall give feedback, advice and assistance where appropriate.
The ADM will also signpost:
  • people who are interested in research to the Research Interest Group.
  • Steering Group members to local contacts and services that are relevant to the plans for the year.
  • DRIG may decide to produce a newsletter and has already established a website: www.drig.org.uk  to raise awareness of the group and promote their activities and to provide information.

DRIG Steering Group

  • The Steering Group will meet quarterly in Dundee at the MRC PPUU, or at the Improvement Academy at Ninewells Hospital.
Current Steering Group
  • Marc van Grieken
  • Sue Harley
  • Chloe Macmillan
  • John Minhinick
  • Werner Remmele
  • Dorothy Roth
  • Michael Roth
  • Esther Sammler

and an executive group currently made up of:

  • Chairman: Marc van Grieken
  • Secretary: Werner Remmele
  • Events manager: vacant

The role of the executive group is to prepare for the Steering Group and to implement the decisions of the Steering Group.

Event Planning
  • DRIG may decide to host Research Events so that local people can hear from Parkinson’s researchers about their work and this is indeed the topic of our first event: Unveiling some of the mechanisms that trigger Parkinson’s.  We have prepared this event in collaboration with the MRC PPUU.
Other plans include:
  • a visit to the MRC PPUU lab
  • Planning and organising research talks or events to local branches of Parkinson’s UK