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16/06/2004 EuroPa Plenary Meeting -Paris -

16/06/2004 EuroPa Plenary Meeting -Paris -. 06.09.04EuroPa Plenary Meeting Paris Agenda EuroPa Plenary Meeting, Paris 9:00 - 9:15Meeting objectives

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Page 1: 16/06/2004 EuroPa Plenary Meeting -Paris -. 06.09.04EuroPa Plenary Meeting Paris Agenda EuroPa Plenary Meeting, Paris 9:00 - 9:15Meeting objectives

16/06/2004

EuroPa Plenary Meeting-Paris -

Page 2: 16/06/2004 EuroPa Plenary Meeting -Paris -. 06.09.04EuroPa Plenary Meeting Paris Agenda EuroPa Plenary Meeting, Paris 9:00 - 9:15Meeting objectives

06.09.04 EuroPa Plenary Meeting Paris

Agenda EuroPa Plenary Meeting, Paris

9:00 - 9:15 Meeting objectives / project status (W. Oertel)

9:15 - 9:30 Technological Implementation Plan (R. Wick)

9.30 -11:00 Discussion of EuroPa’s future (W. Oertel)

10:00 - 10:15 COFFEE BREAK

Deliverables, results and their exploitation of 11:00 Work Package 3 – Patient registry (W. Poewe)

Deliverables, results and their exploitation of 11:30 Work Package 4 – CREO (O. Rascol) 12:00 Work Package 5 – Health economics study (R. Dodel)

Page 3: 16/06/2004 EuroPa Plenary Meeting -Paris -. 06.09.04EuroPa Plenary Meeting Paris Agenda EuroPa Plenary Meeting, Paris 9:00 - 9:15Meeting objectives

06.09.04 EuroPa Plenary Meeting Paris

Agenda EuroPa Plenary Meeting, Paris

12:30 – 13:15 LUNCH BREAK

13:15 Work Package 2 – Data management (M. Stoll)

13:35 Work Package 1 – Network management (R. Wick)

13:50 Discussion of the EuroPa Publication Policy (W. Oertel)

14:15 Work Package 6 – Fundraising (E. Tolosa)

 14:45 Summary of project results and their further use (W. Oertel)

Page 4: 16/06/2004 EuroPa Plenary Meeting -Paris -. 06.09.04EuroPa Plenary Meeting Paris Agenda EuroPa Plenary Meeting, Paris 9:00 - 9:15Meeting objectives

06.09.04 EuroPa Plenary Meeting Paris

Meeting Objectives

• Agreement on the project results and achievements and how they could be further used (in preparation of the TIP)

• Discussion of remaining deliverables required in order to secure final payments

We should in particular discuss:• Analysis of the patient registry data • Protocol, preparation and conduct of the epidemiological study • Status of the EuroPa health economics study (WP 5)• EuroPa publication policy• Further use and development of the patient registry• Continuation of the EuroPa network and its further funding

Page 5: 16/06/2004 EuroPa Plenary Meeting -Paris -. 06.09.04EuroPa Plenary Meeting Paris Agenda EuroPa Plenary Meeting, Paris 9:00 - 9:15Meeting objectives

06.09.04 EuroPa Plenary Meeting Paris

Project status

• Patient registry with about 1.700 entries• Clinical Research Executive Organization defined and working

(CREO)• Protocol of the epidemiological study• Health economics study is ongoing• Funding period ends in less than 3 months (extension by 2

months possible)

Page 6: 16/06/2004 EuroPa Plenary Meeting -Paris -. 06.09.04EuroPa Plenary Meeting Paris Agenda EuroPa Plenary Meeting, Paris 9:00 - 9:15Meeting objectives

06.09.04 EuroPa Plenary Meeting Paris

Remaining deliverables

• Final reports (for each WP and the entire project)

• Technological Implementation Plan

• Constitution & Bylaws and Publication Policy

• Manual describing procedures necessary for conducting a RCT

• Study protocol of the example RCT

• Electronic case report form of the RCT

• Report of cost-of-care analysis

• Model of the health care utilization in the course of PD

• Sustainable funding strategy for EuroPa

Page 7: 16/06/2004 EuroPa Plenary Meeting -Paris -. 06.09.04EuroPa Plenary Meeting Paris Agenda EuroPa Plenary Meeting, Paris 9:00 - 9:15Meeting objectives

06.09.04 EuroPa Plenary Meeting Paris

Remaining Milestones

• Establishment of EuroPa as an independent and fully functioning organization (month 36)

• Inclusion of 4000 patients (month 36) – (currently approx. 1700)

• Designed RCT (month 30)

• Prepared application for external funding (month 36)

• Statement cost of care and quality of life of PD patients in Europe (month 24)

• Decision analytic model to assist health care decisions for PD (month 36)

• Completion of the funding survey (month 30)

• Presentation and commencement of implementation of a business plan for EuroPa (month 33)

Page 8: 16/06/2004 EuroPa Plenary Meeting -Paris -. 06.09.04EuroPa Plenary Meeting Paris Agenda EuroPa Plenary Meeting, Paris 9:00 - 9:15Meeting objectives

06.09.04 EuroPa Plenary Meeting Paris

Future

Main project objective:

Establishment of an infrastructure for an independent European network for clinical research on Parkinson’s disease

Main question:

Is this objective still feasible and desired and how could we proceed?