Rallying to the Challenge

Gauging the perceptions of all stakeholders involved in Parkinson's clinical trials

The Results of this survey by Parkinson's Movement will be presented at the Grand Challenges in PD/Rallying to the Challenge meeting at Grand Rapids, Michigan on 24th September.

Parkinson's Movement (PM) embraces the concept that people with Parkinson's (PwP) should have some influence on decisions which are often made on their behalf concerning specific or wider health issues that affect them.

Parkinson's Movement pools information and opinions, giving PwP a global voice and one which is solely focussed on improving the treatment of Parkinson's and the conduct of clinical trials without organisational bias. PM was founded by PwP. It is run by PwP, and its strategy and influence are all defined by PwP.

The overarching objective of the ‘Rallying to the Challenge’ meeting is to establish how people with Parkinson's can contribute to the effectiveness of clinical trials in Parkinson's.

To assist us, we would be grateful if you could complete this very short survey.

Question Title

* 1. I am a

Neurologist

Clinical researcher

Scientist

Parkinson's specialist nurse

Parkinson's specialist physiotherapist

Person with Parkinson's

Care partner for a person with Parkinson's

Other (please specify)

Question Title

* 2. THIS QUESTION IS EXCLUSIVELY FOR THOSE INVOLVED IN CONDUCTING CLINICAL TRIALS.

From the following list of barriers to effective clinical trials, please TICK the FIVE you consider the most important.

Recruitment of PwP to trials

Subject matter of the trial and perceptions of need for the trial from patient community

Problems with heterogeneous nature of Parkinson's (recruitment/methodology/results of trial)

Ethics approval (time taken)

Institutional contracting (time taken)

Gaining consensus on trial design

Compliance of PwP to trial protocol

Funding

Communication issues with involved parties ie. funding bodies, academic institutions, trial participants.

Practical support from other organisations involved in the trial e.g. commercial partners, public sector, funders, advisory bodies, patient organisations

Patient inertia/ lack of motivation and engagement

Administrative support/time available to manage trial

Problems communicating the importance of the trial or general promotion

Problems associated with outcome measures

Placebo effect

Data collection

Inability to publish results

Supply of drug/placebo

Other barriers not listed above

Question Title

* 3. THIS QUESTION IS EXCLUSIVELY FOR PEOPLE WITH PARKINSON'S AND THEIR CAREGIVERS.

From the following list of possible reasons why you might not participate or engage in clinical trials, please TICK the FIVE you consider the most important.

I may not be able to reclaim all the costs incurred through participating in a trial

Being kept fully informed of both the progress and results of the trial when appropriate

Access to understandable information about what a trial involves,

The upheaval to my life that the trial would cause

I have had (or have heard of) some bad experiences in previous clinical trials

The current system of measuring Parkinson's does not reflect the overall state of my wellbeing

The potentially adverse consequences/side effects of taking part in clinical trials

Clarity on my legal status should something go wrong, eg compensation etc

The privacy of my medical information

I may be given the placebo and not the real drug

The disruption to my current medication regime

Being on one trial may exclude my involvement in other future trials

The effect that participation in a trial will have on my family

I am only interested in trials that seek to delay, stop or reverse the condition permanently

The risks of going on a trial outweigh the benefits

Other reasons not listed above

Question Title

* 4. How many Parkinson's clinical trials have you participated in?

0-5

5-10

10-20

more than 20

Question Title

* 5. Which country do you live in?

Question Title

* 6. Please indicate if you are interested in receiving further information on any of the following.

The results of this survey

Parkinson's Movement www.cureparkinsons.org.uk/sites/parkinsons-movement

The Cure Parkinson's Trust (www.cureparkinsons.org.uk)

The Van Andel Research Institute (www.vai.org)

The Parkinson Study Group (www.parkinson-study-group.org)

If you have ticked any of the above, please enter your name and email address in the box below

Question Title

* 1. I am a

Question Title

* 2. THIS QUESTION IS EXCLUSIVELY FOR THOSE INVOLVED IN CONDUCTING CLINICAL TRIALS. From the following list of barriers to effective clinical trials, please TICK the FIVE you consider the most important.

Question Title

* 3. THIS QUESTION IS EXCLUSIVELY FOR PEOPLE WITH PARKINSON'S AND THEIR CAREGIVERS. From the following list of possible reasons why you might not participate or engage in clinical trials, please TICK the FIVE you consider the most important.

Question Title

* 4. How many Parkinson's clinical trials have you participated in?

Question Title

* 5. Which country do you live in?

Question Title

* 6. Please indicate if you are interested in receiving further information on any of the following.

* 2. THIS QUESTION IS EXCLUSIVELY FOR THOSE INVOLVED IN CONDUCTING CLINICAL TRIALS.

From the following list of barriers to effective clinical trials, please TICK the FIVE you consider the most important.

* 3. THIS QUESTION IS EXCLUSIVELY FOR PEOPLE WITH PARKINSON'S AND THEIR CAREGIVERS.

From the following list of possible reasons why you might not participate or engage in clinical trials, please TICK the FIVE you consider the most important.