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Introduction Parkinsons disease is not just a burden for the patients it also has a substantial social and economic impact. The European countries differ.

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Presentation on theme: "Introduction Parkinsons disease is not just a burden for the patients it also has a substantial social and economic impact. The European countries differ."— Presentation transcript:

1 Introduction Parkinsons 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 Parkinsons 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. Patient registry Organization 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: EuroPa – Using the Advantages of a Multinational Network to Improve Clinical Research and Treatment of Parkinsons Disease (PD) in Europe EuroPa* *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) Figure 1: Current scope of the EuroPa network Objectives 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 multi- center 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. After the funding period EuroPa is expected to become an independent, non-profit organization that will continue to extend its scope and impact. Figure 2: Process of secure data entry to patient registry (above) and example of web-based data entry form (right) 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). Germany, Austria, Czech Republic, Italy France, Spain, Portugal United Kingdom, Sweden The Netherlands, Israel


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