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past projects

Global Parkinson's Disease Survey, 1998
Global Parkinson's Disease Survey

Following on from the 1997 Participation in Life survey, the EPDA carried out the Global Parkinson’s Disease survey the following year. It was one of the largest surveys ever conducted on Parkinson’s and it provided a more in-depth and rigorous investigation into the factors affecting a person with Parkinson’s (PwP) health-related quality of life (HRQL).

It was a large, international and randomised survey that included perspectives from clinicians, PwPs and caregivers from six countries across three continents (Canada, Japan, Italy, Spain, the UK and the US) that had similarly developed health systems. The EPDA enrolled nearly 2,000 respondents: 203 clinicians, 1,020 PwPs and 687 carers.

The survey’s principal aims were to improve on the limitations of previous studies in order to better investigate and understand the factors that influence PwPs’ HRQL, and to identify those elements of disease management that have the greatest effect on the HRQL (in addition to disease stage, related disability and anti-Parkinson’s medication).

Some of the survey’s key conclusions included:

  • “Motor disability (as measured by disease stage) impacts on HRQL. Therefore, it can be reasonably assumed that interventional therapies that alleviate motor symptoms may improve HRQL. However, patients at similar stages of Parkinson’s can have varying levels of perceived HRQL. Therefore, patient-perceived HRQL may not be equated simply with disease severity or medication but may include other factors such as neuropsychiatiric complaints and non-drug therapies.”
  • “They [clinicians] also found that satisfaction with the explanation of the condition at diagnosis and current feelings of optimism all have a statistically significant impact on HRQL.”
  • “The data has clearly indicated that the impact of depression on HRQL is high. This finding, together with the failure of these patients to report it, indicates that depression should be taken into account by clinicians when managing Parkinson’s.”

Like the Participation in Life survey before it, the Global Parkinson’s Disease survey generated evidence – mostly from PwPs themselves – about what constituted quality of life. The surveys revealed that the telling of the diagnosis, depression and alternative types of therapy were all important to a PwP’s HRQL – in other words that drug management was only a small part of the bigger picture. There was now proof that pain, sleep, constipation and many other ‘hidden’ symptoms – not considered to be important at the time – caused greater distress.

Now, of course, these ‘hidden’ symptoms are universally known as non-motor symptoms. But the EPDA – through its innovative data collection surveys such as the Participation in Life and Global Parkinson’s Disease surveys – played a huge part in establishing their integral role in the disease process.

In addition, this wealth of evidence subsequently led to the launch of the EPDA-led Global Declaration on Parkinson’s Disease in 2003, which urged governments around the world to support the Charter for People with Parkinson’s and make public awareness of Parkinson’s a priority health challenge.

The survey report can be downloaded here.


Guide to living with Parkinson's Click here to download
Guide to living with Parkinson's disease

The ‘Guide to living with Parkinson’s disease’, produced by H Lundbeck A/S and Teva Pharmaceutical Industries, in close collaboration with the European Parkinson’s Disease Association (EPDA),  has been designed to answer the most immediate questions of a person diagnosed with Parkinson’s disease – providing information on the disease itself, as well as the many aspects of treatment and management.




Patient relevant endpoints and goal attainments in Parkinson's Disease
Oxford Outcomes

The EPDA has been assisting GlaxoSmithKline in conducting research to understand the impact Parkinson’s has on people living with the disease as well as exploring medication issues.

The project began by interviewing people with Parkinson's (PwPs), family members who were living with someone with Parkinson’s (carers) and doctors who treat PwPs. A total of 32 interviews were conducted in the UK and Spain, with 10 PwPs, three carers and three treating doctors interviewed in each country. The interviews were completed in April 2012.

In-depth analysis was carried out on each of these interviews, and they have since been used to develop an online survey that will be available for PwPs to use across several European countries.

The survey aims to explore in more detail the relative impact of the symptoms of Parkinson’s, associated medication issues, and the relative importance of different aspects of treatment.

The survey has been successfully piloted with 30 PwPs in the UK, where data collection now continues; it will shortly be launched in Spain, Italy and France. The research will be completed later this year.

To find out more about the research please call or email Charlotte Howard at Oxford Outcomes.

e-mail: charlotte.howard@oxfordoutcomes.com



Most children don't understand medical conditions (or associated procedures and treatments), and they are often scared by what is going on around them. 

Medikidz, founded by doctors, is an initiative to explain medical concepts to young people in a fun and interesting way, using comic books.

The Medikidz are five superheroes on a mission to help young people understand illness and medical concepts. They take children on a journey through Mediland - an outerspace planet shaped just like the human body - to explain the diagnosis, investigation, treatment and prevention of different medical conditions.

Credibility is the cornerstone of the Medikidz offering - professional medical writers and doctors write all the content, which is subsequently peer-reviewed by leading consultants in each respective field.

In Medikidz Explain Parkinson's Disease, many aspects of Parkinson's disease are approached and explained in a simplified manner. The format of the comic is based on a real-life case study. 

Medikidz explain Parkinson's Disease


Start date

June 2012


12 months


11 April 2013

EPDA representation

Lizzie Graham
Chiu Man
Dominic Graham




My Life, My PD

My Life, My PD

My Life, My PD, was developed in conjunction with a European panel of healthcare professionals and people with an interest in Parkinson's and provides practical advice on managing some of the real life challenges that daily face people with Parkinson’s disease, such as sleeping difficulties and relationships with family and friends.

The guide (My Life, My PD Patient Booklet) is divided into five areas, each one including suggested questions that people with Parkinson’s disease can use when talking with their doctor and useful tips to help them prepare for their consultation. 



My Life. My PD

Living with PD: Day & Night Video

Although therapies for Parkinson’s have been available for many years, the EPDA's  Real Life Real PD survey highlighted the need for treatments that improve symptoms during the day and at night.

This short film was produced to illustrate some of the real life difficulties in living with Parkinson’s. It features Terry Kavanagh and his wife Jean, who have lived with the disease for over 20 years.


Global Parkinson's Disease Survey

Real Life, Real PD survey

The Real Life, Real PD survey was a patient survey conducted across EPDA member countries and supported by pharmaceutical company, GlaxoSmithKline, focusing on the realities of living with Parkinson’s disease (PD) both ‘day and night’.

The survey focused upon questions surrounding difficulties with daily activities such as eating and dressing, mood and possible impact on relationships plus sleep disturbances and emotional well-being. 


Pan-European Results and Recommendations for Change

The Real Life, Real PD online survey of Parkinson’s Disease (PD), provided insights into the realities of living with PD. Almost 3000 patients from across Europe participated in the survey between October 2007 and February 2008, when final results were collated and analysed.

A multidisciplinary panel of healthcare professionals and people with an interest in PD, have since reviewed the survey results and developed ten recommendations that could improve the management of PD. It is hoped that the results of the survey will highlight the need for better control of PD symptoms over a 24-hour period and some of the less widely addressed aspects of living with the condition.

My Life My PD


The patient booklet is also available in the following languages (click on link to download):


Press release


Occupational therapy survey, 2009
How People Living with Parkinson's Disease in Four European Countries View Occupational Therapy

Because people with Parkinson’s (PwPs) experience diverse symptoms that impact heavily on many aspects of their daily life, occupational therapists play an important part in optimising independence, enhancing coping strategies and social participation.

As a result, the EPDA carried out an occupational therapy survey from 2008 to 2009. The survey evaluated the contribution occupational therapists make to the management of Parkinson’s on a daily basis.

The survey was translated into Norwegian, Swedish and Slovenian, and the results were published in the European Neurological Journal and can be downloaded here.





Participation in Life survey, 1997
EPDA Participation in Life Survey Results 1999

The Participation in Life Survey questioned people with Parkinson’s disease in 14 countries world-wide in the latter half of 1998 and first quarter of 1999. It asked a range of far-reaching questions relating to the physical symptoms of the disease, problems associated with their treatments and emotional and psychological problems.

The Survey participants were presented with a list of recognized symptoms or areas of life that someone with Parkinson’s disease might experience difficulty in. They were asked to state the extent to which each difficulty or symptom affected their ability to go about their daily life. The following are the list of key PD-related symptoms that were considered in preparing the questionnaire:

  • Tremors (trembling or shaking)
  • Bradykinesia (slowness of movement)
  • Rigidity or stiffness
  • Impaired balance/walking
  • Confusion/thought processes/concentration
  • Speech and swallowing difficulties
  • Bladder and bowel dysfunction
  • Sexual dysfunction
  • Sleeping problems.

Questions relating to the emotional and psychological effects of PD were also included. These were based on an internationally recognized rating scale known ad SASS (Social Adaptation Self-Evaluation Scale). These social function scores were additionally calculated for each respondent.



PDNS Core Competencies report, 2009
PDNS Core Competencies

The role of the Parkinson’s Disease Nurse Specialist is intrinsic to the promotion of dignity and empowerment throughout the illness cycle for people living with Parkinson’s disease, their families and carers through the provision of specialist information and access to high quality, holistic health and social care.

We are delighted to provide this Guide as an outcome of the work undertaken by the European Parkinson’s Disease Association and the International Council of Nurses to establish an international profile and framework of core competencies and standards for Parkinson’s Disease Nurse Specialists (PDNS) globally. The results of this joint endeavour are a user-friendly Guide that highlights the key findings from an Audit of International PDNS Practice undertaken in 2007 and the ICN Framework of Competencies for the Specialist Nurse published 2009.

The Guide recognises the necessity to build on the present, but also acknowledges that the needs of local populations will require the PDNS to deliver care appropriate to the context in which they practice. It serves as a useful tool to advocate for the development of PDNS services around the world.

Download report

Download literature review


Regional project

Regional Project

The EPDA's Regional Project is an initiative that aims to develop more regular links between the EPDA and its member organisations that share language and cultural similarities. 

The project also brings together EPDA members and representatives of the treatment industry in the same region of Europe to explore the possibility of working together across borders and sharing experiences on mutually beneficial initiatives.

  • To listen to the regional Parkinson’s organisations and understand their respective priority areas.
  • To share learning between the EPDA, the member organisations and the treatment industry.
  • To identify and develop a regional and collaborative project that would involve collaborative partnerships with the treatment industry.
  • To identify realistic timelines and an evaluation process.
  • To share the results of the project with all the EPDA member organisations.


An initial EPDA 'planning meeting' is held with all contributing member organisations. This meeting identifies three priority areas that are common to all the members. It is hoped that from these priority areas a collaborative regional project could be developed. 

If you have any questions, please email info@epda.eu.com.     


  • Allan Bergholt  
  • Anders Leines  
    Norges Parkinsonforbund
  • Kari Reinikainen  
    GSK, Finland
  • Jorry Højer  
  • Magne Fredriksen  
    Norges Parkinsonforbund
  • Susanna Korpivaara  
    GSK, Finland
  • Marianne Munk  
  • Sverre Nilsen  
    Norges Parkinsonforbund
  • Elizabeth Lambertsen  
    Orion Pharma, Finland
  • Mette Holst  
  • Bo Jäghult  
  • Outi Tuominen  
    UCB, Finland
  • Durid Johannesen  
  • Christe Eker  
  • Alexandra Moutet  
    AbbVie, France
  • Kristianna Michelsen  
  • Maude Eker  
  • Hilde Abrahamsen  
    AbbVie, Norway
  • Kirsti Martikainen  
    Suomen Parkinson-liitto ry
  • Jennifer Shum  
    AbbVie, Belgium
  • Unn-Tone Lien  
    Medtronic Norge AS, Norway
  • Ariel Gordin  
    Suomen Parkinson-liitto ry
  • Charlotte Nortvedt  
    UCB, Belgium
  • Lotta Luciani  
    AbbVie, Sweden
  • Arja Pasila  
    Suomen Parkinson-liitto ry
  • Danek Olsen  
    AbbVie, Denmark
  • Adam Pinter  
    Medtronic, Switzerland
  • Hanna Mattila  
    Suomen Parkinson-liitto ry
  • Ossi Koskinen  
    AbbVie, Finland
Priority topics

The following three priority areas were agreed at the planning meeting in March 2013.

  1. Rehabilitation
  2. Carers
  3. Young people with Parkinson’s


Key outcomes from the May meeting
  • Younger people with Parkinson’s (YPwP) emerged as the priority theme for a potential regional project
  • An interim steering group was formed (featuring two representatives from each organisation)
  • The treatment industry were invited to attend future meetings (and they accepted)
  • A project timeline will be agreed once further discussions have been held and decisions made at the next interim steering group meeting
  • Magne Wang Fredriksen (Norway) agreed to co-ordinate the next meeting (18 December 2013)
  • The December meeting will be held at the Parkinsonforeningen offices, Copenhagen 

Points to consider

  • Increasing activity/membership of YPwP
  • YPwP help make the organisation more dynamic and assist with changing the public perception of the organisation and the disease
  • A survey was suggested to find out the needs of YPwP
  • Social media was agreed to be an important tool
  • YPwP ambassadors were thought to be important in helping increase engagement with younger people


Related documents

Follow-up meeting in December

A meeting was held on 18 December 2013 with representatives from Norway, Denmark and Sweden discussing the identified key areas that they could all work together on.

Current projects and activities were discussed for each of the countries. 

Challenges raised

  • The age definition of a younger person with Parkinson's differs in each country
  • How to identify younger people with Parkinson's in each country
  • The variability of geographical distances that would have an impact on attendance at any meetings
  • A major challenge is that the legislation and social security support differs between countries – there is no regional similarity
  • Parkinson's needs to be raised on the political agenda of each country so that the complex issues of younger people with Parkinson's can be highlighted with greater success
  • To be successful with the above objectives, partnerships need to be formed between patient organisations, healthcare professionals and the treatment industry.

Key outcome of December meeting

The key outcome of this meeting was that World Parkinson's Disease Day 2015 is an ideal opportunity for all the organisations and their partners to work together as a region, sharing the same focus to improve the lives of younger people with Parkinson's and their families.

Spring 2014 meeting

Representatives from Denmark, Finland, Faroe Islands, Sweden and Norway came together in Stockholm and shared experiences for each organisation's projects and programme activities.

Topics discussed included:

  • Careers in every Nordic country
  • How to readch and attract younger people with parkinson's and their families
  • Rehabilitation situation / programms in the regions
  • Brainbus project in Sweden 2014 - 2015
  • International Parkinson's Disease Day - 11th April 2015


Nordic meetings will continue to take place on annual basis with an emphasis of "learning in partnership" and "inspiring each other".


EU-funded projects

The European Union-funded projects in this section are partnered by the EPDA. Click on links for more information.

World PD Day

The EPDA’s early years saw a flurry of activity that established the umbrella organisation as a true ‘mover and shaker’ in the world of Parkinson’s. However, 1997 proved to be a landmark year with the first ever World Parkinson’s Disease Day on 11 April, which also saw the launch of the  Charter for People with Parkinson’s in London, the UK.

The event, which commemorated the birthday of Dr James Parkinson, was the first of successive annual World Parkinson’s Disease Day celebrations – every year it aims to raise the profile of Parkinson’s and enhance the public's awareness of the disease.

The 1997 event was totally unique – more than 30 Parkinson’s organisations around the world united on the same day to not only raise awareness of the disease but also to support the EPDA’s Charter. This sense of unity had never been seen before on such a scale. Previously, European Parkinson’s organisations saw themselves as independent entities and held their own regional awareness periods at different times of the year. There was no single day devoted to the disease.

World Parkinson’s Disease Day has since taken place every year on 11 April, inspiring countless awareness-raising activities from Parkinson’s organisations around the world. In short, it has become the most important date in the Parkinson’s calendar.  

To put the event in context of the time, it was co-sponsored by the World Health Organisation and attracted a wealth of high-profile support including Pope John Paul II, Luciano Pavarotti, Princess Diana, Muhammad Ali, various UK prime ministers and other influential people from around the world.