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

Our mission is to enable tailored care for people with Parkinson's throughout their journey.

This initiative involves representatives across the entire Parkinson’s disease 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.

We aim to create a sustainable environment that ensures people with Parkinson’s receive optimal and timely access to appropriate diagnosis, treatment and care throughout the progression of their disease.

Governance

European Strategic Committee

The My PD Journey European Strategic Committee is chaired by the EPDA. The committee provides strategic oversight, ensuring effective implementation of the initiative's work programme and includes representatives from:

  • European Brain Council [EBC]
  • EuroCarers
  • European Parkinson’s Disease Association [EPDA]
  • Council of Occupational Therapists for the European Countries [COTEC]
  • Cure Parkinson’s Trust
  • Representatives from the Parkinson’s Specialist Panel (see below)

Parkinson's Specialist Panel

The Parkinson’s Specialist Panel consists of a number of high-profile European disease experts (neurologists). Together, they provide insight and direction to the European Strategic Committee and the overall My PD Journey work programme.

Members of the panel include:

  • Alberto Albanese (Italy)
  • Angelo Antonini (Italy)
  • Bastiaan Bloem (the Netherlands)
  • Ray Chaudhuri (the UK)
  • Nir Giladi (Israel)
  • Tove Henriksen (Denmark) (Chair)
  • Pablo Martinez-Martin (Spain)
  • Per Odin (Germany/Sweden)
  • Fabiana Radicati (Italy)
  • Olivier Rascol (France)
  • Anette Schrag (the UK)
  • Fabrizio Stocchi (Italy) (Vice-chair)
  • Annamária Takáts (Hungary)
  • Eduardo Tolosa (Spain)

Secretariat

The EPDA is the Secretariat. We provide strategic oversight, management, administration and support to the running of the My PD Journey initiative, its constituent groups and its work programme.

For further information, please email secretariat@mpdj.eu

Funding partners

We have partnered with the following treatment industry companies, all of whom support our My PD Journey mission. 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 secretariat@mpdj.eu.

My PD Journey is currently being supported by: 

Work programme

The My PD Journey work programme is designed to deliver the strategies that have been agreed by the European Strategic Committee. These are:  

  1. To understand the different hurdles that negatively impact treating the progression of Parkinson’s
  2. To develop solutions that contribute to comprehensive and individualised management of Parkinson’s
  3. To implement the My PD Journey solutions

The current My PD Journey ‘solution’ is the Parkinson's Disease Composite Scale (outlined below).

The Parkinson’s Disease Composite Scale

My PD Journey has developed a new, simple composite scale to measure the severity of symptoms of people with Parkinson's in a timely way.

Designed to complement existing scales used by neurologists, this composite scale offers a holistic view of Parkinson’s disease, measuring both motor and non-motor symptoms.

It can be conducted in roughly 15-20 minutes, making a consultation between the patient and their neurologist much faster than is usually the case.

Upon completion later in 2017, the scale will facilitate the monitoring of the disease’s progression and offer a new, unique tool for clinical follow up. You can download the Parkinson's Disease Composite Scale in the 'Downloads' section below.

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.

How to get involved

If you would like to get involved in upcoming Composite Scale activities, please email secretariat@mpdj.eu.

Working group

Fabrizio Stocchi MD PhD
Professor of Neurology. Institute for Research and Medical Care IRCCS San Raffaele Rome. Rome, Italy

Pablo Martinez-Martin MD PhD
Instituto de Salud Carlos III, Center National of Epidemiology (CNE), Spain

Fabiana Giada Radicati, PhD
Clinical Trial Center, IRCSS San Raffaele Pisana, Rome, Italy

Political advocacy

Our mission

Since the launch of My PD Journey in 2014, the EPDA has actively engaged with political leaders at all levels on behalf of My PD Journey to promote the value of multi-stakeholder projects and the need for governmental backing for the coalition’s activities.

In 2015, My PD Journey was presented at a landmark event in Brussels on 14 April 2015, hosted by Vice-President of the European Parliament Mairead McGuiness (Ireland) and attended by high-level European Commission officials, MEPs and Member State representatives.

Core priorities and activities

The EU and national governments have a clear competence in facilitating good practices in medicine and promoting innovative tools that improve disease management in its Member States. In this context, My PD Journey is advocating for robust governmental support for the new Composite Scale at all levels.

On 18 February 2016, My PD Journey hosted a high-level summit on Parkinson’s disease in Europe in the European parliament in Brussels. The event featured the Composite Scale, and a policy discussion with EU decision makers and stakeholders on options to improve timely diagnosis, treatment and care. It was supported by the invaluable patronage of MEP Heinz Becker (Austria) and MEP Jutta Steinruck (Germany), and featured a presentation from the European Commission’s Directorate for Research and Innovation on options for EU funding and research.

The My PD Journey coalition remains in ongoing dialogue with EU policymakers and supports EPDA member organisations in their advocacy efforts at a national level.

Upcoming events

On 29 March 2017, the EPDA hosted a Composite Scale Workshop in Brussels, bringing together representatives from the EU decision making community as well as the healthcare and patient spheres to discuss how policy can promote the development and roll-out of new, innovative tools such as the Composite Scale. A report about this meeting will available here soon.

Should you wish to learn about upcoming activities or get involved, please email secretariat@mpdj.eu.

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.

The research consists of primary (qualitative and quantitative) and secondary evidence that helps enable Parkinson’s disease stakeholders and policymakers to better understand the different hurdles that negatively impact treating the progression of Parkinson’s.

A series of Europe-wide ‘good practice’ recommendations have been developed following in-depth analysis of the research; these recommendations and everything to do with the European Inventory can be found in the Executive Summary, available for download below.

The EPDA presented this research to the healthcare community in the form of a poster at the 20th International Congress of Parkinson’s Disease and Movement Disorders in Berlin in June 2016.

The research will be published in a peer-reviewed publication later in 2017. To receive a copy, please email secretariat@mpdj.eu.

My PD Journey in the media

News about My PD Journey has featured in the media.

For example, the EPDA presented the challenges of Parkinson’s disease and My PD Journey’s policy recommendations on how to improve accessibility and treatment in an article published in Adjacent Government’s August 2016 edition.

In addition, Oruen, a leading medical channel dedicated to improve patient care and outcomes, published a full article on My PD Journey, detailing the project’s achievements and work programme.

Annex

Extensive validation study of the Parkinson’s Disease Composite Scale
Sites involved

Title

Principle investigator

Centre name

Country

PhD, MD

Vladimira Vuletic

Clinical Department of Neurology, University Hospital Centre Rijeka

Croatia

Prof

Jan Roth

Clinic of Neurology Katerinska

Czech Republic

MD

Tove Henriksen

University Hospital of Bispebjerg

Denmark

Prof

Bostantjopoulou Sevasti

Aristotle University of Thessaloniki

Greece

Assoc Prof

John Ellul

University Hospital of Patras

Greece

Prof

Leonidas Stefanis

Hospital "Attikon"

Greece

Prof

Panagiotis Ziko

Hellenic Airforce General Hospital

Greece

Dr

Tanya Gurevich

Tel Aviv Medical Centre

Israel

Prof

Angelo Antonini

IRCCS fondazione ospedale San Camillo

Italy

MD

Massimo Corbo

Casa di Cura Privata del Policlinico Milano SpA

Italy

Dr

Annamária Takáts

Semmelweis University

Romania

Prof

Alexandru Ovidu Bajenaru

University of Medicine and Pharmacy "Carlo Davila" Bucharest

Romania

MD

Cristian Falup-Pecuraiu

Department of Neurology, County Clinical Emergency Hospital of Brașov

Romania

Prof

Michaela Adriana Simu

Hospital of Timişoara

Romania

Prof

Alla Guekht

Department of Neurology and Neurosurgery, Russian National Research Medical University and

Moscow Research and Clinical Center for Neuropsychiatry

Russia

Prof

Vladimir Kostić

Institute for Neurology CCS,
School of Medicine

Serbia

MD

Matej Skorvanek

Šafárik University and Louis Pasteur University Hospital

Slovakia

MD

María José Martí

Servicio de Neurología
Hospital Clínic de Barcelona

Spain

PhD

Pablo Mir Rivera

Hospital Universitario Virgen del Rocío

Spain

MD

Anders Johansson

Karolinska University Hospital, Department of Clinical Neuroscience, Stockholm

Sweden

MD

Sven E Pålhagen

Karolinska University Hospital, Department of Clinical Neuroscience, Stockholm

Sweden

Dr

Sophie Molloy

Charing Cross Hospital, London

UK

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