What is My PD Journey?
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.
This initiative involves 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 is 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 Parkinson's Disease Composite Scale
A new tool for Parkinson’s evaluation
The My PD Journey coalition, on behalf of the EPDA, has developed the Parkinson’s Disease Composite Scale – a simple new scale to be used primarily by neurologists and other healthcare professionals familiar with Parkinson’s that measures the severity of symptoms experienced by people with Parkinson’s in a timely way.
Why was it developed?
Existing scales used by neurologists currently explore different aspects of the condition, but do not offer a comprehensive view of a person’s condition. The development of the new Composite Scale was therefore urgently needed as 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.
How does it work?
The Composite Scale can be conducted in roughly 15 to 20 minutes, making a consultation between the person with Parkinson’s and their neurologist much faster than is usually the case, therefore freeing up time within the consultation to discuss other things important to the individual. In addition, it grades the relative importance of particular symptoms, taking into account people with Parkinson’s perspectives, which are important in the delivery of timely and effective treatment and care.
- In collaboration with the Parkinson’s specialist neurologists who led the scale’s development - Professors Fabrizio Stocchi (Italy) and Pablo Martinez Martin (Spain) - My PD Journey introduced the scale to an audience of more than 60 political and medical stakeholders in the European Parliament in Brussels in February 2016. It was later presented at the 20th International Congress of Parkinson’s Disease and Movement Disorders in Berlin in June 2016.
- The results of the first validation study were published in January 2018. The results of the study concluded that the PDCS appears to be a feasible, acceptable, reproducible and valid scale. (Results of the first validation study on the Parkinson’s Disease Composite Scale in the European Journal of Neurology (available ahead of print) | January 2018)
- A second and more extensive validation study, aimed at reaffirming the first study’s findings, is currently underway.
The PDCS was made possible by funding support from AbbVie, Britannia, Medtronic, Teva and UCB.
Where to next?
- My PD Journey is currently working with neurological and clinical bodies, policymakers, and patient organisations to roll out this new tool across Europe, and beyond.
- A second and more extensive validation study, aimed at reaffirming the first study’s findings, is currently underway. Professor Fabiana Radicati (Italy), one of the authors of the scale, is the clinical trial coordinator of this wider validation study.
- There are 22 centres participating in the second validation study from 14 countries
- The study involves around 700 patients
- The study is due to be finalised and published shortly.
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.
The European Inventory was made possible by financial support from AbbVie and strategic guidance from Professor Anette Schrag (UCL).
From September 1st 2017, the European Strategic Committee, which governed my PD journey, 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 Cure Parkinson’s Trust.
My PD Journey welcomes new partners and support, to help it carry out the aims of the project.