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CPT’s Dr Richard Wyse opened the meeting by discussing whether disease modification in Parkinson’s could be a reality. As we know, Parkinson’s symptomatic therapies have many imperfections. Encouragingly there is research into both better symptomatic and disease modifying treatments. At CPT however our sole focus is to is to halt progression of the disease and ultimately to reverse it. The charity has preclinical and regenerative medicine programmes, but it also [...]

The final session was presented by Parkinson’s UK’s Amelia Hursey who shared the charity’s new online trial resource called Taking Part which lists studies made searchable by postcode. The site was designed following detailed research with PwP (people with Parkinson's) who revealed that 70% of PwPs want to take part in research but only 24% have taken part. Many PwPs reported that they wanted to hear about [...]

With the group, Jemma explored the obstacles to recruitment, highlighting that practical barriers such as visits to the clinic, travel, logistics, balancing clinical appointments with the demands of life, were all barriers. Additional concerns were medication (the fact that potential participants might be asked to take even more medication) and the way to [...]

The afternoon focused on involving people in research, starting with two talks reflecting the perspectives of two PwP (people with Parkinson's): Why research? Presenting information and How best to engage PwP with research. Vicki Dillon’s powerful speech started by explaining her involvement in research, and in particular in a clinical trial. She called for more support during and after trials and the need to mentor/buddy patients and their [...]

Professor Oliver Bandmann explored the Study Cycle – from research idea to successful study closure. Professor Bandmann has been working for the last 10 years to identify potential drugs that might target mitochondrial dysfunction in Parkinson’s. Given that animal models in Parkinson’s are imperfect, the team in Sheffield tested 2,000 drugs in genetically stratified patient tissue – tissue from people living with Parkinson’s (PwP) with [...]

Dr Emily Henderson provided fascinating insight about the challenges of becoming a new PI by explaining her own journey. 'At the end of the talk I want to advertise to you that wherever you are, there is lots of opportunities to take part in research.' She very simply explained that the first step to becoming a PI was to contact the R&D department to discover what’s on the portfolio. If there is a project of interest, it is easy to complete [...]

Pauline Fitzell, Research Team Leader at Torbay Hospital, explained her experience of getting studies underway. The team in Torbay is set up to recruit into NIHR adopted studies in multiple disease areas, and it is only now they are setting up a portfolio of Parkinson’s studies with the Parkinson’s Disease Nurse Specialist as PI. Pauline explained in Torbay there were no trials and patients were missing out [...]

For a number of years we have received feedback at the Parkinson’s Academy about including sessions about Research. Taking these responses and working with The Cure Parkinson’s Trust (CPT) and NIHR leads Dr Camille Carroll and Professor Oliver Bandmann, and the Academy’s Dr Peter Fletcher, we designed the Research Engagement meeting for professionals who are […]