The MHRA is considering making it a requirement to involve people with relevant and lived experience in the design, management, conduct and dissemination of clinical studies.  Cure Parkinson’s along with many AMRC charities already prioritise effective patient public involvement and engagement as a key ingredient of all the research we support.  

There are many ways to involve patients in both clinical and preclinical research; we have developed a number of resources for our internal use in evaluating projects and for briefing people with Parkinson’s when we seek to gain their insights, input and involvement.  In addition to these resources, Cure Parkinson’s uses the guidance developed by the National Institute for Health and Care Research (NIHR) and other Parkinson’s organisations.

The NIHR 'Involve patients' – read more here

More information:
Our research strategy Apply for funding

Resources:

Research resources: Insights and priorities from people with Parkinson’s

In this section we have published papers of insights and priorities of people affected by Parkinson’s. 

Find out more here
Information resources for people with Parkinson’s about clinical trials

Cure Parkinson’s has a range of resources co-created with people with Parkinson’s to assist other people with Parkinson’s in understanding what is involved in certain aspects of clinical trials participation. These resources are available on request and include: • About clinical trials • About informed consent • About inclusion and exclusion criteria • About assessments • About lumbar punctures • Clinical Trials Charter

Email here
Involving people with Parkinson’s in the design, management and conduct of research

Cure Parkinson’s has a range of resources to assist researchers in involving people with Parkinson’s in contributing to research. These resources are available on request and include: Reviewing a clinical trial protocol; Who to involve and when; PPIE roles: – PPIE Scientist – PPIE Communicator – PPIE Clinical Trials Advisor

Email here

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