EuroPa – Using the Advantages of a Multinational Network to Improve Clinical
Research and Treatment of Parkinson‘s Disease (PD) in Europe
EuroPa*
Introduction
Parkinson’s disease is not just a burden for the patients it
also has a substantial social and economic impact. The
European countries differ regarding their treatment
guidelines and it still takes too long for valid research
results to find their way into clinical practice. By
establishing a pan-European network of clinical experts,
research and clinical trials as well as the utilization of
evidence based knowledge could be improved and
accelerated. The European Cooperative Network for
Research, Diagnosis and Therapy of Parkinson’s Disease
(EuroPa) is currently developing the infrastructure of such
a clinical research & trial network of European PD experts.
The constitution of the EuroPa network is funded by a
grant from the European Commission over a period of
three years.
Figure 2: Process of secure data entry to
patient registry (above) and example of
web-based data entry form (right)
Figure 1: Current scope of the EuroPa network
Objectives
Organization
Patient registry
EuroPa intends to become a multinational clinical research
and trial center that bundles and coordinates existing
competence in clinically orientated research on PD.
A
main achievement will be a central patient registry
combined with a web-based data entry system. The clinical
trial expertise and the capability of recruiting clinically well
described patients from the central database will give
EuroPa an advantage in planning and conducting multicenter trials and research projects. The EuroPa network
will also carry out epidemiological and socio-economic
studies. The network infrastructure provides the resources
needed for evaluating and comparing the care for PD
patients in all participating countries.
EuroPa is comprised of leading PD researchers from 11
countries: Austria, Czech Republic, France, Germany,
Israel, Italy, Portugal, Spain, Sweden, The Netherlands,
United Kingdom. The locations of the participating
clinical centers are displayed in Figure 1. Project
coordinator is W. Oertel from Marburg (Germany).
Decision making boards are the Contractors Council and
the Steering Committee. Project tasks are defined as
work packages and will be managed by according work
groups. The network itself is organized in a nodal
structure in order to facilitate the administrative and
organizational processes. There are 4 nodes:
Clinical data of PD patients are stored in a central
database – the EuroPa patient registry. The data will be
stored anonymized. A patient identification code (PID) will
be allocated randomly to each patient. PID and the
patient personal data (name, address) will be kept by the
responsible clinical center. The medical data of patients
who consent is collected using a web-application
providing a uniform questionnaire for all patients. Data
transfer will be encrypted. Access to the database is
password-protected. Each participating center can only
access its own data. Only members authorized by the
Steering Committee will have temporary access to query
the entire registry for selecting entries for a certain study.
The patient registry will be protected against misuse by
various security measures.
The EuroPa IT-infrastructure is being developed by the
interActive Systems GmbH, Berlin (Germany).
After the funding period EuroPa is expected to become an
independent, non-profit organization that will continue to
extend its scope and impact.
• Germany, Austria, Czech Republic, Italy
• France, Spain, Portugal
• United Kingdom, Sweden
• The Netherlands, Israel
*Members of EuroPa are: P. Barone (Naples), R. Dodel (Bonn), F. Gilbert (Berlin), K.L. Leenders (Groningen), A. Lees (London), O. Lindvall (Lund), E. Melamed (Tel Aviv), W. Oertel (Marburg), W. Poewe
(Innsbruck), O. Rascol (Toulouse), E. Ruzicka (Prague), C. Sampaio (Lisbon), E. Tolosa (Barcelona), R.P. Wick (Marburg)