EUSTAR Website Project

A preliminary analysis of our main objectives and practical solutions

C. Henegar (France), F. Van den Hoogen (Holland), D. Farge (France)

3 Major questions

• WHY ? → General objectives and main concept

• WHICH ? Functionalities of the website

• HOW ? To build a web site → practical solutions available

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

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

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

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

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.

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

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

How?

• Legal issues about medical data management and privacy

• Technical solutions for developing a web platform

• Management of practical development

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,…)

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 ?

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

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

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?

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

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?