1. EUSTAR Website Project A preliminary analysis of our main objectives and practical solutions C. Henegar (France), F. Van den Hoogen (Holland), D. Farge (France)

2. 3 Major questions WHY ? → General objectives and main concept WHICH ? Functionalities of the website HOW ? To build a web site → practical solutions available

3. WHY ? We need to : –Communicate –Present ourselves –Promote the research on scleroderma –Share experience and medical data –Teach scleroderma assessment and management –Collaborate with other international medical organizations

4. WHICH CONTENT ? Internal functioning –Membership functionalities, charter of principles –Research platform... to be detailed –Educational resources Outer relations –Presentation of the EUSTAR group –Corporate sponsorship –Relations with other scientific groups

5. WHICH CONTENT ? Membership functionalities –Directory of all study centers and persons involved –Private discussion forum: discussing clinical or research problems, sharing experience, asking for assistance, etc. –Download and upload internal documents: research protocols material synthesis of working meetings internal announcements

6. WHICH CONTENT ? Research platform –Registry of all European clinical trials promoted by EUSTAR –Web platform for data transfer and sharing: Insert, consult or update data in the central database (private virtual spaces) Transfer data between a local software application and the central database Dynamic synthesis of existing data Allow specific queries of the entire database

7. WHICH CONTENT ? Educational platform –Announcements concerning the courses, attending information, etc. –Online material for scleroderma management courses –Bibliography section: → medical references and bibliographic links, preformatted queries on Medline, etc.

8. WHICH CONTENT ? Promoting the image of EUSTAR –Aims of the group –Process of his constitution –Organization and structure –Ongoing activities of the EUSTAR group: meetings, congresses, courses

9. WHICH CONTENT ? And also… –A charter of ethic and scientific principles guiding the EUSTAR activity –Corporate sponsorship and links to other related websites –Information concerning the procedures accomplished in order to comply with the legal requirements: security of medical data management privacy matters

10. How? Legal issues about medical data management and privacy Technical solutions for developing a web platform Management of practical development

11. How? Legal issues –Collect information about the legal requirements and procedures in each country –Establish the precise needs in term of secure transfer and management of data –Share the experience of others which have already passed through such formalities (EBMT,…)

12. How? Technical solutions : 2 major problems –The development of a web application A “dynamic” part : management of medical data A “static” part : the rest of the provided content –The hosting and the long term management of the website and central database - who does what ?

13. How? Development of the website Solution 1 : –Adapting an already existent commercial solution or software package “High level providers” – complete solutions including web hosting and maintenance “Low level providers” – partial solutions which need to be assembled –Advantages : Cheap and relatively easy to manage and to maintain

14. How? Development of the website Solution 2 : –Building an entirely new application designed to fit “perfectly” EUSTAR specific needs –Advantages : A rich palette of functionalities specifically designed to fit particular needs (statistical evaluations of data, knowledge modeling based data management, etc) –Disadvantages : Expensive, resources and time consuming

15. How? Web hosting –Different solutions commercial or open source: Win2k, Unix, Linux, etc. –Dedicated server versus shared hosting –Security protocols: SSL, S-HTTP, VPN, … depending on the legal requirements –The control over the central database?

16. CONCLUSION Points to start from… –Establish a charter of principles based on a large consensus among EUSTAR group members –Clarify the legal background –Define the precise requirements prior to the conception of the web platform –Establish a project development agenda

17. CONCLUSION Practical development –Strategic planning and project management –Domain registration and web hosting –Graphic design –Database development –Maintenance and editorial policy …and who does it?