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  • Open Access

People with Parkinson's design clinical trials charter to improve communication about, recruitment to and retention in Parkinson's clinical trials

  • Jon Stamford1,
  • Tom Isaacs1 and
  • Camille Carroll2
Trials201516(Suppl 2):P86

https://doi.org/10.1186/1745-6215-16-S2-P86

Published: 16 November 2015

Keywords

SimvastatinPotential Adverse ConsequenceFinal ContentParticipant SurveyTrial Success

Background

A 2014 survey of people with Parkinson’s (PwPs) and clinicians internationally identified the following perceived barriers to clinical trial success in Parkinson’s disease (PD): fear of potential adverse consequences; communication failures and misunderstandings over the trial process (PwPs); and insufficient financial/administrative support (clinicians)[1]. In order to address these misperceptions, we have developed a clinical trials charter for use by those considering participating in, or conducting, Parkinson’s clinical research. The ultimate aim of the charter is to improve recruitment to and retention in clinical trials in PD.

Method

The charter has been developed internationally by PwPs, in consultation with Parkinson’s advocates, Parkinson’s clinical trials specialists and key Parkinson’s patient organisations. It is a simple two-sided document outlining standards of practice and reasonable expectations for participants and researchers. Accompanying resources, including a range of leaflets and informative film, have also been developed. The charter and resources have been reviewed and analysed in focus groups to ensure clarity of final content.

Planned use

The charter will be evaluated in an upcoming mullticentre randomised controlled trial of simvastatin as a neuroprotective agent in PD, by means of participant surveys, to understand its potential role in supporting recruitment and retention in Parkinson’s trials.

Authors’ Affiliations

(1)
Cure Parkinson's Trust, London, UK
(2)
Plymouth University Peninsula Schools of Medicine and Dentistry, Plymouth, UK

References

  1. Mathur S, DeWitte S, Robledo I, Isaacs T, Stamford J: Rising To The Challenges Of Clinical Trial Improvement In Parkinson's Disease. Journal of Parkinson's Disease. 2015, DOI: 10.3233/JPD-150541Google Scholar

Copyright

© Stamford et al. 2015

This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

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