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 becoming or aspire to become involved with Parkinson’s research on many different levels.
The result was a stimulating meeting that started with defining the landscape of Parkinson’s research, showcasing how to move from a great research idea to delivering it in clinic, via giving an overview of how to get started in research and the support that is available whilst embracing the considerations from the perspectives of those living with the condition, and pragmatic approaches from those who have just started the journey.
In his introduction to the meeting CPT Trustee and Parkinson’s Academy Founding Faculty member Dr Peter Fletcher noted that we are currently at an interesting intersection in that there are trials of potentially disease modifying treatments underway and more on the horizon. The picture is changing rapidly and with urgency which makes this an exciting time to become involved in Parkinson’s research and importantly make that research available to patients.
Speaker session videos
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 halt progression of the disease and […]
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 […]
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 […]
PwP perspectives: Why research? Presenting the information? How best to engage PwP with research, including PPI?
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 […]
The Study Life Cycle: From research idea to successful study closure… and everything in between: case study UDCA
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 […]
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 […]
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 […]
Dr Camille Carroll introduced the audience to the Clinical Research Network and how can it assist researchers. The Clinical Research Network provides support for researchers, both non-commercial and commercial, throughout the whole study cycle – from the conception of an idea through to successful study conclusion and dissemination of results. Camille explained […]
Programme 6 December 2018Research Engagement Programme, 6 December 2018
We at the Academy are keen to continue providing you with relevant and interesting information on this subject, and would like to hear from you as to what information – and in what form – you would find most useful going forward. More videos? Hosted webinars? Resources on clinical trials? Do you prefer case studies and life stories, or quantitative evidence bases? Please tell us your views at firstname.lastname@example.org or complete the form available so we can continue to support your research journey.