29/08/2003 Work Package 1 Network Management R. Wick – Senior Project Manager

Midterm Review Meeting, Helsinki2 Tasks Establishment of the Contractors Council, the EuroPa Steering Committee and specialist groups Installing a meeting schedule and distribution of deliverables Internal control (monitoring of milestones and deliverables) Installing a web-based communication system Definition of quality standards for cooperating centers of excellence Founding a consortium with a constitution & bylaws and a publication policy Implementation of national nodes

Midterm Review Meeting, Helsinki3 Achievements 1 st Contractors Council (start-up) meeting in 01/2002 Specification of objectives, milestones, responsibilities, tasks Constitution of work groups for WP 3 and WP 4 Discussion of minimal data set Constitution of the management group in 2002 Senior project manager and project managers at the national nodes (F, NL, UK), the CIO (iAS), WP 3 project manager (A), project assistant (D)

Midterm Review Meeting, Helsinki4 Achievements May 2002: constitution of the Steering Committee Members: W. Oertel (project and D-node coordinator, co-leader WP 4) O. Rascol (leader WP 4, F-node coordinator) A. Lees (UK-node coordinator) K.L. Leenders (NL-node coordinator) W. Poewe (leader WP 3) T. Jaeger (iAS, CIO) C. Sampaio (co-leader WP 4) E. Tolosa (leader WP 6)

Midterm Review Meeting, Helsinki5 Meetings Contractor Council Meetings: 31 January 2002, Frankfurt, start-up meeting 11 July 2003, Barcelona, midterm meeting Steering Committee Meetings: 25 July 2002, Frankfurt 27 October 2002, Vienna 19 February 2003, Innsbruck Adjacent specialist and management group meetings Regular telephone conferences

Midterm Review Meeting, Helsinki6 Communication

Midterm Review Meeting, Helsinki7 Achievements Data protection concept Patient information brochure and consent form Project communication (poster presentation, press release, website etc.) Publication policy draft Consortium agreement draft Specification of the requirements for the patient registry database and application Purchasing of hard- and software

Midterm Review Meeting, Helsinki8 Ressources used (by 05/2003) Personnel 41 of 108 person months funded 12 of 36 person months by permanent staff Subcontracting 9 person months for WP 5 (health economic research) about 3 person months for lawyers and translation Equipment almost the entire amount given for central database server, hard- and software for security infrastructure

Midterm Review Meeting, Helsinki9 Status of milestones and deliverables Milestone / Deliverable Definition of quality standards of centers of excellence (month 12) Establishment of EuroPa as an independent and fully functioning organisation (month 36) 1 st periodic report Data protection & security concept Constitution & bylaws Status in work (with WP 4) in work delivered delivered (with WP 2) in work

Midterm Review Meeting, Helsinki10 Important open tasks Implementation of national nodes Identification of potential centres for national nodes in several countries Support for an application for national funding for a Spanish PD network. Already existing national nodes (D, UK) cannot be integrated into EuroPa yet. Problems: Additional financial resources must be found for node implementation There is no legal basis yet for integrating new members. The EuroPa infrastructure needs to be set up and approved first.

Midterm Review Meeting, Helsinki11 Important open tasks Constitution and bylaws There has no organisation / consortium been constituted yet. Consortium agreement drafted does not provide a solution for EuroPas sustainability. Project results (registry policy, clinical trial organisation) should be considered for a constitution. Solutions: important questions are currently handled by resolutions A proper legal form must be found for the network still during the funding period in order to secure: 1.the long-term existence and sustainability of EuroPa and the further use of the infrastructure currently being established, 2.an organisational basis for admitting new members (national nodes, centers from other countries)