The Cure Parkinson's Trust (CPT) has always had people living with the condition at the very heart of its decision making process. CPT was co-founded by people with Parkinson’s and continues to draw on people's experiences of living with the condition to shape its policies and activities.

As the medical world changes, putting people with Parkinson's (PwP) at the centre of both the management and treatment of Parkinson's (PD) is of paramount importance. CPT is leading by example and ensuring that new scientific discoveries and new practices in Parkinson's are relevant, focused, needed and above all else shaped by those living with the condition. We connect with PwP through surveys, conferences, direct discussion, via our website and through social media. PwP's, along with family members and carers, often share some of THE most relevant information concerning their condition. Their experience is immediate and the most accurate: what symptoms are the most difficult to deal with, what impact does the condition have on their relationships with others, and how does the condition affect their day to day life? 

PwP are an essential part of the Linked Clinical Trials (LCT) prioritisation meeting - a number of advocates have attended each of our LCT meetings. Also, the Rallying to the Challenge meeting is held in parallel with the Van Andel Institute's annual 'Grand Challenges in Parkinson’s Disease' symposium and PD advocates are the influential contingent in this collaborative conference.

Steve De Witte, MJFF Advocate, PAIRS* trained (*Parkinson's Disease Foundation (PDF), 'Parkinson's Advocates in Research'), living with Parkinson’s
Israel Robledo, PAN advocate, PAIRS trained, living with Parkinson’s
Dr Soania Mathur, GP living with Parkinson’s
Tom Isaacs, co-founder of The Cure Parkinson’s Trust and Parkinson’s Movement
Dr Jon Stamford, neuroscientist living with Parkinson’s
David Jones, pharma executive, living with Parkinson’s
Richard Windle, Patient engagement advocate, living with Parkinson’s
Ron Rutowski, Parkinson’s advocate, Michigan
Eros Bresolin, Parkinson’s Movement advocate with experience of clinical trials

It is important that drug candidates chosen for scientific reasons are also of relevance to people living with Parkinson’s now.  PwP are a vital resource to help in the design and delivery of clinical trials. We believe that it is time to change perceptions and ensure that PwP are considered genuine partners in clinical trials and this is the thinking behind the Parkinson's Movement (PM) development of its Clinical Trials Charter - developed by people living with Parkinson's and clinicians, it is a series of guidelines which sets out standards of practice for those involved and outlines and reinforces the responsibilities of, and benefits for, patients and scientists participating in clinical trials.

Volunteering for Trials

CPT supported trials which are seeking partipants are:

Simvastatin Trial 
Deferiprone Study
Families Study 

(Please click into the trials listed above to find out more)

For further information about trials which are recruiting go to the Clinical website

If you would like us to contact you when a UK trial is open for recruitment, please take a few moments to complete some personal details in this short survey.  If you are interested in taking part in other trials you can also register with Fox Trial Finder. Fox Trial Finder was created by the Michael J. Fox Foundation to help increase the numbers of people taking part in trials to accelerate the Parkinson's drug development process. 

Parkinson's World - a new and exciting initiative:

The Cure Parkinson’s Trust’s sole focus on curing Parkinson’s sets us apart from other Parkinson’s organisations, but the research we need to undertake to find a cure can only be done if we reach more people.

This can be achieved by creating an online resource - a comprehensive interactive website that will allow users to seek information that is relevant to them, contribute their experiences, map their own disease and, importantly, create questions about their own condition.

Parkinson's World, it is envisaged, will become the 'go-to' hub of information about Parkinson’s through peer to peer recommendations and endorsements and active collaborations with patient organisations and forums worldwide. This resource will collect data, allowing us to investigate key research questions by mining the data and identifying trends and patterns not previously correlated. This data will inform our research and guide us to a cure or cures for Parkinson’s.

Parkinson's World will enable a climatic change in Parkinson’s. Its aim is to create an environment in which everything connected to progress in Parkinson’s can flourish. Through its ability to reach all parts of the Parkinson’s community, this single portal aims to unify, encourage, enable, inspire, disseminate, inform, educate, engage , fulfil, accelerate and deliver a more joined up, focused approach to improving the lives of those throughout the world living with Parkinson’s, and finding a cure.

Read more about this exciting project by downloading the Parkinson's World pdf (this initiative is generously supported by The October Club).