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What is My PD Journey?

My PD Journey was a multi-stakeholder European coalition – led by the EPDA – working towards improving the lives of people living with Parkinson’s disease.

This initiative involved representatives across the entire Parkinson’s community – including European umbrella healthcare organisations, high-profile European Parkinson’s neurologists, people with Parkinson’s, carers and members of the multidisciplinary healthcare team, among others.

My PD Journey was also supported by a number of high-level policymakers at European level, including Members of the European Parliament, officials of the European Commission, and Public Health Attachés in the EU Council.

Watch our short video for a brief introduction to the My PD Journey initiative.

The European Inventory

My PD Journey’s first major activity was the development of a ‘European Inventory’, a research project designed to identify gaps in Parkinson’s care and seek out national examples of good practice that could be adopted in other regions. It was completed by an independent research organisation and presented to an audience of decision makers and stakeholders in Brussels in April 2015.

To learn more about the European Inventory, download the Executive Summary, the full research findings, and other useful documents in the Downloads section below.

The European Inventory was made possible by financial support from AbbVie and strategic guidance from Prof Anette Schrag (University College of London).

Awards

In December 2018, the EPDA was awarded a Silver Medal by the European Society for Person Centered Healthcare (ESPCH) for the European Inventory-inspired paper 'The subjective experience of Parkinson's: a qualitative study in 60 people with mild to moderate Parkinson’s in 11 European countries', published in the European Journal of Neurology, authored by Rowena K Merritt, Sarah Hotham, Lizzie Graham and Anette Schrag.

The Parkinson's Disease Composite Scale

The My PD Journey coalition, on behalf of the EPDA, developed the Parkinson’s Disease Composite Scale (PDCS), as its latest major activity. This simple new rating scale, to be used primarily by neurologists and other healthcare professionals familiar with Parkinson’s, measures the severity of symptoms experienced by people with Parkinson’s in a timely way.

Designed to complement existing scales, the PDCS offers a comprehensive view of Parkinson's. It combines both motor symptoms and non-motor symptoms, as well as treatment-related complications.

You can download the PDCS itself, but for more in-depth information about the PDCS – what it is, why it was created, how it works – visit our dedicated online section.

Downloads

 

Project support

In September 2017, the European Strategic Committee (ESC), which governed My PD Journey since it launched in 2014, was disbanded.

The ESC included a number of high-profile European Parkinson’s specialist neurologists as well as representatives from the European Brain Council (EBC), Eurocarers, the European Parkinson’s Disease Association (EPDA), the Council of Occupational Therapists for the European Countries (COTEC) and The Cure Parkinson's Trust (CPT).

My PD Journey is now concluded – but the EPDA would be happy to consider developing new activities in the framework of this project in the future, depending on available resources and on-going strategic priorities.

If you would like to learn more about My PD Journey, please email info@epda.eu.com.

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