Activities

Prospects:

If you would like to add ideas to this list, email us at rsn@parkinsons.org.uk

  • We have an ambition to visit all the PUK Branches to promote research engagement for members to get involved with research – sign up to the Research Support Network, take part in research or become a Research Champion for your group
  • Sharing Patient Public Interaction experiences : a workshop involving PUK grant applicants and RIG members
  • Visit to Cambridge Lab open day
  • Talk given by Excellence Network and Parkinson’s Voices staff
  • Talk given by Parkinson’s UK Drug Discovery Manager on virtual biotech project.
  • Workshop:  Using public research databases such as PubMed and ClinicalTrials.gov to find out more about Parkinson’s.
  • The Cambridge clinical trials unit’s (CCTU) “Patient Led Research Hub” supports patient-led research.  The DRINK clinical trial is an example of how this initiative can work. They have 20 other projects currently under development

Hosting virtual meetings:

As the scale of the EoE area becomes apparent so too do the logistics. A group focused on Cambridge could easily create a series of events by calling on local resources alone.  This could involve Cambridge-based researchers giving talks about their areas of research, or getting groups of younger researchers together to discuss PPI experiences and issues. The latter might work as a road show, but the bigger job of communicating and discussing research progress to branch members and beyond is more difficult to scale.

Do we have any bright ideas how technology might be bought to bear on the distance problem?  For example, could we arrange for a researcher to give talk to a group of research champions (RCs), video it and then have the RCs role it out to their respective groups adding commentary of their own?  In the first instance we should exploit the fact that the Gretchen Amphlett lecture is going to be filmed – that could be rolled out to RCs all over the UK to share with their groups.

Past:

Speaker: Keith Howlett, 27 April 2018 ,  Talk to Cambridge Parkinson’s Group, an overview of the EoE RIG.

Speaker: Becky & Andrew, 26 Sept 2018, Talk to Saffron Walden Parkinson’s Group, an overview of Research and Parkinsons in general.

Organisers: Julie Wilson and members of the RIG SC, 21 May 2018, Working Together event Cambridge, Local Group meeting at 1.15 – 2pm at the Meadows Community Centre, Cambridge.  Workshop:  How can the RIG best support local area groups?

Organisers: Kecia Harris and members of the RIG SC, 15 June 2018, Working Together event, Stowmarket.  Workshop: How can the RIG best support local area groups?

The Gretchen Amphlett Lecture 2018, Cambridge.

The archived lecture can be found on You Tube:   This year’s  lectures, introduced by EoERIG member Ruth Herman, featured Dr Simon Stott, Research Associate at the University of Cambridge, who discussed his collaborative research on breath analysis technology being used to identify people with Parkinson’s. In addition Professor Oliver Bandmann described world-leading research from the Sheffield Institute of Translational Neuroscience where his team are using samples of skin cells to better understand Parkinson’s.