My PD Journey is a multi-stakeholder European coalition – led by the EPDA – which works towards improving the lives of people living with Parkinson’s disease.
The coalition involves representatives from across the 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.
Watch our short video for a brief introduction to the My MD Journey initiative.
The My PD Journey work programme is designed to implement three concrete strategies:
- Understand the different hurdles that negatively impact treating the progression of Parkinson’s.
- Develop solutions that contribute to comprehensive and individualised management of Parkinson’s.
- Implement the My PD Journey solutions across Europe and beyond.
My PD Journey’s flagship solutions include a new Parkinson's Disease Composite Scale (PDCS) and EU-wide research on unmet needs in healthcare systems (the European Inventory).
The Parkinson's Disease Composite Scale
My PD Journey has developed a new Parkinson’s Disease Composite Scale (PDCS) that measures the severity of symptoms experienced by people with Parkinson’s in a timely way. It combines motor symptoms, non-motor symptoms and treatment-related complications; it is also simple and relatively fast to use. Designed to complement existing scales, the Composite Scale is the first to offer a holistic view of Parkinson’s.
The Composite Scale can be conducted in roughly 15 to 20 minutes. It grades the relative importance of particular symptoms, taking into account people with Parkinson’s perspectives, which are critical in the delivery of timely and effective treatment and care.
To learn more about the Composite Scale, download our easy-to-read brochure and Q&A flyer. These documents provide all the latest developments, including details about the scale's second validation study, which is currently underway in 22 centres across 14 European countries.
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 launched in Brussels in April 2015.
To learn more about the European Inventory, download the Executive Summary, the full research findings, and other useful documents below.
Project governance and partners
European Strategic Committee
My PD Journey was launched in 2014 and was, until 2017, governed by the European Strategic Committee (ESC), chaired by the EPDA. The ESC provided strategic oversight during the initial years of the project, ensuring effective implementation of the initiative's work programme. From September 1st 2017, the ESC was disbanded, making My PD Journey a standalone EPDA project.
From 2014-2017, the ESC included a number of high-profile European Parkinson’s specialist neurologists as well as representatives from:
- European Brain Council (EBC)
- European Parkinson’s Disease Association (EPDA)
- Council of Occupational Therapists for the European Countries (COTEC)
- Cure Parkinson’s Trust.
The former ESC representatives are still provided with the opportunity to provide strategic guidance to My PD Journey through regular updates.
We have partnered with the following treatment industry companies, all of which support the aims of My PD Journey. We are always looking for more organisations to join us, so if you are interested in becoming a funding partner or can offer in-kind support at either a European or national level, please contact firstname.lastname@example.org.
My PD Journey is currently being supported by: