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EUROPAR

The EUROPAR project has been created to research the non-motor symptoms (NMS) of Parkinson’s. The project’s committee, which consists of healthcare professionals, people with Parkinson’s (PwPs) and patient organisation representatives, aims to represent the interests of PwPs throughout Europe by establishing a research centre at King’s College Hospital in London, the UK.

While pockets of expertise in NMS already exist, EUROPAR investigates all the non-movement aspects of Parkinson’s (including diagnosis, symptoms and treatment). It aims to increase understanding of this unmet need and help improve treatments for PwPs. The research centre works closely with patient groups such as Parkinson’s UK and the EPDA, as well as the World Federation of Neurology’s Parkinson’s division and other leading Parkinson’s research centres in Denmark, Germany, Holland, Italy and Spain.

Specifically, EUROPAR focuses on translational ‘bench to bedside’ research (for example, looking at what impact ‘real life’ treatments such as skin patches, injections and blood transfusions may have on the non-movement aspects of Parkinson’s) and the development of better patient and public involvement in the treatment of Parkinson’s so that PwPs can become experts in their condition and learn from each other.

More information about EUROPAR can be found here.



Objective

EUROPAR (European Parkinson's Group) is a multidisciplinary group that was formed to perform “real life” non-motor based clinical studies across a wide range of people with Parkinson’s throughout Europe. The main aim of EUROPAR is to pursue studies as they happen in real life and described as a "holistic" natural history study in Parkinson's. The study will additionally include people with Parkinson's who are often excluded from clinical trials e.g. due to their age.


Proposed activities

  • Non-motor symptom holistic research (natural history, novel staging and response to treatment)

  • Quality of life studies
  • Real life comparisons between different therapeutic strategies with non-motor measures as primary outcome measures

  • Future collaboration with national and international biomarker studies.

In addition, it is anticipated to develop:

  • greater patient public interaction in relation to clinical trials

  • expert patient programme

  • non-motor studies across several centres in Europe addressing issues such as physical therapy in Parkinson’s, sex education, carer needs, stress, vision, pain and sleep.

Regular sessions are planned whereby people with Parkinson's can be educated about their own conditions so that in future it will be possible for them to lead focus groups and expert patient groups themselves with the aim delivering care for Parkinson’s much more within the community and thereby reducing hospital admissions.


EPDA and EUROPAR

Abstracts are regularly submitted to international congresses and the EPDA is asked to comment on and approve these in advance.  These abstracts can be found under 'Initiatives' below.


Initiatives

The main EUROPAR project is a longitudinal study in Parkinson’s (NILS: Non-motor Longitudinal International Study), the largest international study addressing non-motor profiling of Parkinson's and natural history of non-motor symptoms together with treatment response and clinico-pathological correlations. This project has been adopted by the Department of Health in the UK (NIHR: National Institute of Health Research) and also supported by the Spanish ministry of education, and by the MRC (Medical Research Council) Centre for Neurodegeneration Research at King’s College Hospital.


Other EUROPAR projects

Alongside the NILS study, EUROPAR is also running some smaller projects addressing various topics. Study results have been presented at international congresses and details of poster presentations, each of which has been reviewed and approved by EPDA, can be downloaded below.


CRISP (Community for Research Involvement and Support by PwPs) is the EUROPAR expert patient group formed to promote PPI (public and patient involvement). The group is a member of INVOLVE, a national advisory group funded by the National Institute for Health Research (NIHR). INVOLVE was established to promote PPI in research in order to improve the way research is prioritised, commissioned, undertaken, communicated and used.

Whilst the EPDA does not participate in CRISP, it is fully supportive of its aims.

The task of CRISP is to:

  • Contribute to design and development of research projects e.g. rating scales, questionnaires, patient information sheets etc. and therefore using a patient’s perspective to input into research
  • Review current research (e. g. EUROPAR projects or looking at poorly recruiting studies) in Parkinson’s or related areas
  • Give a patient representative opinion on planned projects, that are introduced in meetings, so that patient and public input can be taken into account
  • Develop ideas for future projects highlighting unmet needs from a patient perspective
For further information on CRISP and minutes of meetings please contact Ms A Rizos

See also: