In 2014, the James Lind Alliance and Parkinson’s UK set up a Patient Setting Priority group to find the top 10 research priorities that people living with Parkinson’s (PwP) and health and social care professionals would like to see answered. This was published in 2014 by Deane et al. The aim was to use this information to guide future research and make sure researchers focus on the most urgent needs of people affected by Parkinson’s.
At an OPDC open day in 2016, clinical lead Michele Hu introduced the priorities and asked attendees what their preferences were from the top 26 identified in the original survey. The open day participants selected different priorities to those published in the original Top 10. In addition, there were a lot of free text answers pertaining to speech problems and therapies.
Francesca Bowring, a research nurse within the discovery project and project manager for Centre-PD is now working to update the survey to reflect what current participants in Parkinson’s research and their friends/family would most like answered by research.
If you are happy to participate, you can: