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Introduction

One of the EPDA’s four strategic goals is “to support the global Parkinson’s community in the search for a cure”. On a practical level, this objective can be achieved by raising awareness and informing the Parkinson's community about the opportunities to get involved in medical and scientific research – especially clinical trials. 

According to Parkinson's UK, 70% of people living with the condition are keen to take part in clinical trials, yet only 24% have done so. This section displays informative and educational resources developed by our partners that can help people with Parkinson's and their families make an informed choice about possibly enrolling in clinical trials.

For more detailed information about the trial process, see our dedicated clinical trials section.

Getting involved

The participation of people with Parkinson's in clinical trials is fundamental for research institutions and the treatment industry to work towards the development of new treatments for the condition. However, there is often a shortage of volunteers willing to take part in clinical trials. The reasons for this are vast and complex, but may be due to a lack of easily available information on trials in a particular location or area, or to doctors being unaware of trials that are being held locally.

If you would like to become involved in a clinical trial, it is essential to discuss this first with your doctor as it is likely that they will be required to refer you to the trial centre. You should find out as much information as possible about the trial so you can fully consider your participation. Your doctor will be able to advise you on the advantages and disadvantages of taking part (based on your own particular situation), and they may be able to refer you to other members of the multidisciplinary team who have more knowledge about a particular area of research.

For more information about what to expect when participating in a clinical trial, see our clinical trials section.

About this section

The resources below are aimed at people who would like to get involved in Parkinson's clinical trials. They include some online tools to help you find the right trial for you, taking into account geographical location and several other factors, as well as guides in different languages that can be easily downloaded, printed and disseminated free of charge. Together, they provide answers to many important questions about taking part in clinical trials.

The final section includes resources aimed at helping research teams with recruitment and retention.

How to find the right trial for you

There are several trials running at one time on a range of potential Parkinson’s treatments. Some may run only in a particular country, while others may span many countries. A good place to start is by asking your doctor or neurologist if they are aware of any trials or research centres in your area. The resources and tools below will also help you find the right clinical trial for you.

Fox Trial Finder

Fox Trial Finder was created by The Michael J. Fox Foundation to help increase the flow of willing participants – both people with Parkinson’s and control participants who do not have Parkinson’s – into the clinical trials that need them, thereby accelerating the Parkinson’s drug development process.

Volunteers who sign up for Fox Trial Finder receive a list of trials in their area and get email updates about new trials that start recruiting, helping them determine which trials make sense for them.

Fox Trial Finder is currently available in the following languages:

An online global study: Fox Insight

The Michael J. Fox Foundation has established Fox Insight, a dynamic online global clinical study, to build a large, diverse cohort of people with Parkinson’s and age-matched control volunteers through a digital platform. Fox Insight is a long-term observational study that complements traditional research through online, wearable and mobile technology. The study seeks to enroll tens of thousands of diverse participants, which would make it the largest and most representative Parkinson’s research study to date.

Learn more and sign up to participate in the study.

Parkinson's Progression Markers Initiative

The Parkinson’s Progression Markers Initiative (PPMI) is an observational clinical study launched in 2010 by The Michael J. Fox Foundation’s to find Parkinson’s biomarkers – disease indicators that are critical missing links in the search for better Parkinson’s treatments. At PPMI’s 33 clinical sites in 11 countries, more than 1.500 participants contribute clinical data and biosamples (such as blood or spinal fluid) into a large database and specimen bank.

PPMI follows participants for at least five years to better understand biologic changes that occur over time. This helps researchers understand the progression of Parkinson’s and potentially identify one or more biomarkers of Parkinson’s.

Learn more and visit the PPMI study website.

Journal of Parkinson's Disease – Clinical Trials Highlights

The Clinical Trial Highlights section of the Journal of Parkinson's Disease (JPD) was launched in 2019 and is devoted to raising awareness of the clinical trials landscape in Parkinson’s, promoting discussion and progress in the conduct and outcome of studies.

The section includes articles on the topics published in JPD, as well as details of featured individual clinical trials.

Learn more and visit the JPD clinical trials list.

Other resources

The following websites may be helpful in researching what clinical trials are currently taking place:

  • PDTrialTracker.info provides all members of the Parkinson's community with analysis of ongoing Parkinson's clinical trials and observational studies throughout the world
  • The EU Clinical Trials Register provides a search facility for information on clinical trials in European Union (EU) member states and the European Economic Area (EEA)
  • UK Clinical Trials Gateway lists clinical trials based in the UK
  • Parkinson's UK details current UK Parkinson’s clinical studies
  • clinicaltrials.gov provides a search facility for trials in more than 170 countries on a wide range of conditions
  • CenterWatch includes links to research facilities for patients and healthcare professionals
  • isrctn.com is a primary clinical trial registry recognised by the World Health Organisation (WHO) and the International Committee of Medical Journal Editors (ICMJE) that accepts all clinical research studies, providing content validation and curation and the unique identification number necessary for publication
  • The Spanish Clinical Trials Registry is a public database listing information on all clinical trials authorised in Spain since 2013
  • The CUREiTT app is designed to empower patients to identify and participate in clinical trials.

In addition, the online tool below was developed by companies Antidote™ and IQVIA to help potential volunteers easily find suitable clinical trials ongoing in their country and region, searching by disease area and postcode.

 

Resources for potential participants

Navigating Guide Web

Navigating Clinical Trials: A Guide for Parkinson’s Patients and Families

The Navigating Clinical Trials guide was developed by The Michael J. Fox Foundation and its purpose is to educate potential volunteers on the process and impact of participating in a Parkinson's clinical trial. This 58-page guide includes a detailed explanation of how clinical trials work, as well as a description of options people with Parkinson’s have to participate in research throughout their journey with the condition; the last chapter focuses on genetic research and testing – all featuring several patient testimonials.

The guide is currently available in the following languages:

Observatorio Web

Observatorio Párkinson

The Federación Española de Párkinson (Spanish Parkinson’s Federation, FEP) has launched the Observatorio Párkinson project to promote and support research through dissemination, promotion of the participation of people with Parkinson’s and the analysis of the reality of Parkinson's disease.

To achieve its purpose, Observatorio Párkinson focuses on achieving three strategic objectives:

  1. To communicate and disseminate information on technological, clinical and healthcare research on Parkinson's, in a clear and accessible way.
  2. To disseminate information about opportunities for people with Parkinson's to be involved in research and about the needs of clinical trials participants.
  3. To analyse the situation of people with Parkinson's in Spain in terms of access to resources, protection of rights and implementation of public policies.

FEP aims to establish collaboration networks between public bodies, research centers, universities, scientific societies and other stakeholders involved in Parkinson's research.

Read more about the Observatorio Párkinson project, and download the project infographics about clinical trials participation and brain tissue donation.

Resources for research teams

The resources in this section were developed to help research teams recruit and retain volunteers in Parkinson's clinical trials.

Best Practices Web

Accelerating Clinical Trials – Best Practices for Recruitment and Retention

This 50-page manual, published by The Michael J. Fox Foundation, uses the participant journey as an organising principle for optimising clinical trial design, increasing awareness and enthusiasm for participation, and addressing frequently encountered challenges. It features several case studies of successful clinical trials where recruitment and retention strategies have been effective.

 

Recruitment Toolkit Web

Recruitment and retention toolkits

This suite, developed by The Michael J. Fox Foundation, includes patient-friendly tools that anyone designing a clinical study can customise and use to demystify research and present a study to the Parkinson's community.

 

Working with the EPDA on clinical trials awareness

Sharing information

Sharing information and good practices has always been a key EPDA focus; we would therefore be happy to work with research institutions, treatment industry companies and other Parkinson's organisations that have high-quality resources and tools to share.

If you or your organisation have developed resources aimed at promoting awareness and demystifying Parkinson’s clinical trials, or to inform and help potential volunteers to find suitable studies, please contact info@epda.eu.com.

Partnering with us

As the only European Parkinson’s umbrella organisation, the EPDA often receives requests for partnership from companies working on clinical trials of new Parkinson’s medicines and treatment/management devices.​

The EPDA is currently looking at new ways to raise awareness of the research opportunities that are available to people with Parkinson’s and their families, particularly clinical trials.

Please download our guidelines on how the EPDA can assist companies and research institutions in raising awareness about clinical trials:

Related reading

  • Comparison of an Online-Only Parkinson’s Disease Research Cohort to Cohorts Assessed In Person – research paper

Articles from Parkinson's Life online magazine

Disclaimer

Some of the materials included in this page have been developed by third parties. The EPDA is sharing these resources for information purposes only; they do not represent the EPDA’s views and are not an endorsement by the EPDA of any particular treatments, therapies or products.

The EPDA would like to thank the following organisations and companies for granting us permission to use the materials included in this section:

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