Support needed from people with Parkinson’s in evaluating The Cure Parkinson’s Trust’s research work                                                                                                                                                                                                                                                                

We are seeking volunteers in two areas to support the research work of The Cure Parkinson’s Trust.                                                                       

A. We need two volunteers to join our Research Committee.
B. We need support in reviewing our grants, particularly proposals for clinical trials.                                                                                           

A. Research Committee                                                                                                                                                                           

Our Research Committee meets quarterly. It comprises basic researchers, clinician/scientists, pharmaceutical specialists and people living with Parkinson’s. The committee is chaired by neurologist Dr John Scadding. These meetings are stimulating, targeted, relevant and positive. We are seeking like-minded people with Parkinson’s with an interest in and understanding of research to join the committee for a two year period.

The committee is tasked to review applications that have been submitted to the charity. The committee debates the quality of the science in particular the relevance and proximity of the project to a cure for Parkinson’s. If the project shows the potential to slow, stop or reverse Parkinson’s and shows evidence of clinical translation within five years, it may be sent to peer review. At the subsequent meeting these peer reviews are analysed and funding recommendations are made to CPT’s Trustees, who make all funding decisions.                                                  

                                                                                                                                                                                                                

B. Reviewing Grants for Clinical Trials                                                                                                                                                    

The Cure Parkinson’s Trust supports clinical trials of potential treatments to slow, stop and/or reverse Parkinson’s. We ensure that every clinical trial involves people with Parkinson’s in the design process. This is to ensure that the trials are deliverable, and the needs of people with Parkinson’s (PwP) have been considered throughout. We also involve people with Parkinson’s in reviewing grant applications, particularly for clinical trials.                                                                                                                                                                                            

1. Clarity and significance of research question to be answered
2. How clearly the scientific rationale and feasibility are explained: is the non-scientific summary clear
3. Whether the trial is doable for PwPs?
a. Are there any concerns over any of the procedures and is there clarity why these procedures are needed?
b. Is there a clear rationale as to why a particular group of patients has been chosen?
c. Is there clear justification for the number and nature of the clinic visits required?
d. Is there clarity over the outcome measures selected?
e. Is the time frame for the trial feasible?
f. Are the recruitment strategies sensible – is there a communication strategy as part of this?
4. If successful, potential impact of this work
5. Whether the investigator embraces PPI (patient public involvement) and if so, how?
a. Are there lay people on the project steering group?
b. Have the relevant national / local organisations been contacted for their input? Are there plans to involve them in the study design / study management / in dissemination of the results?
c. Is the PPI element ‘tokenistic’, or has real thought and planning been put into it?

If you are interested in getting involved in our research work, we'd love to hear from you. Please contact Helen.