1. 1 ITHANET + / 13 December 2008, Brussels ITHANET + – More Portal Intro Carsten W. Lederer Intro Carsten W. Lederer ITHANET + 1 st Steering Committee Meeting 13 December 2008, Brussels ITHANET + 1 st Steering Committee Meeting 13 December 2008, Brussels

2. 2 ITHANET + / 13 December 2008, Brussels RPF Funding  Research Promotion Foundation – a Cypriote funding body  Official Title: ITHANET – The International Thalassaemia Portal  24 months duration, starting 1 st December 2008  Total budget €150,158  Requested budget €129,998  Research Promotion Foundation – a Cypriote funding body  Official Title: ITHANET – The International Thalassaemia Portal  24 months duration, starting 1 st December 2008  Total budget €150,158  Requested budget €129,998

3. 3 ITHANET + / 13 December 2008, Brussels Key Objectives Establish the ITHANET Portal as a resource for Researchers Clinicians Patients of haemoglobinopathies Facilitate collaboration in the field Help improve and standardise procedures Provide international language support Provide a forum of discussion More of the same? Establish the ITHANET Portal as a resource for Researchers Clinicians Patients of haemoglobinopathies Facilitate collaboration in the field Help improve and standardise procedures Provide international language support Provide a forum of discussion More of the same?

4. 4 ITHANET + / 13 December 2008, Brussels Key Actions Portal Environment Implementation of wiki-based content management Multiple-language support Database Interactive and customisable user interface Full integration of sequence data and disease annotations for α- and β- globin genes Continuity Maintenance and enhancement of existing contents and functions Dissemination Publication of availability to create a contributing user community Virtual self-maintenance as overriding target! Portal Environment Implementation of wiki-based content management Multiple-language support Database Interactive and customisable user interface Full integration of sequence data and disease annotations for α- and β- globin genes Continuity Maintenance and enhancement of existing contents and functions Dissemination Publication of availability to create a contributing user community Virtual self-maintenance as overriding target!

5. 5 ITHANET + / 13 December 2008, Brussels Work-Packages WP1 Project Management WP2 Dissemination and Exploitation of Results WP3 Relational Database Structure and Interface WP4 WikiThal WP5 Portal Design As usual for ITHANET: Everything is interlinked Portal is a dissemination and management tool (WP1, WP2) WikiThal and remaining Portal will be complementary (WP4, WP5) Database and Interface have to be fully integrated in the Portal (WP3–5) WP1 Project Management WP2 Dissemination and Exploitation of Results WP3 Relational Database Structure and Interface WP4 WikiThal WP5 Portal Design As usual for ITHANET: Everything is interlinked Portal is a dissemination and management tool (WP1, WP2) WikiThal and remaining Portal will be complementary (WP4, WP5) Database and Interface have to be fully integrated in the Portal (WP3–5)

6. 6 ITHANET + / 13 December 2008, Brussels 3 Phases of Implementation – Phase 1 Phase 1 Comprehensive relational database on sequence variations Priming of database with all existing ITHANET data Defining fields and interconnectedness for additional data WikiThal environment using MediaWiki tools Moving relevant content to wiki-based content management Creating section templates for third-party contributions Phase 1 Comprehensive relational database on sequence variations Priming of database with all existing ITHANET data Defining fields and interconnectedness for additional data WikiThal environment using MediaWiki tools Moving relevant content to wiki-based content management Creating section templates for third-party contributions

7. 7 ITHANET + / 13 December 2008, Brussels 3 Phases of Implementation – Phase 2 Phase 2 Integration of WikiThal and remaining Portal content Access to non-wiki Portal features (FORUMS, ITHANETBASE, streaming media) Removal of redundancies (Integration of WikiThal content with database contents) Publication of the WikiThal environment Graphical user interface for access to globin data Phase 2 Integration of WikiThal and remaining Portal content Access to non-wiki Portal features (FORUMS, ITHANETBASE, streaming media) Removal of redundancies (Integration of WikiThal content with database contents) Publication of the WikiThal environment Graphical user interface for access to globin data

8. 8 ITHANET + / 13 December 2008, Brussels 3 Phases of Implementation – Phase 3 Phase 3 Implementation of custom output for database queries Choice of output fields (Saveable preferences) (Saveable decorations) (Provision of preferences and decorations for common use) Implementation of multi-language support Revision of existing sections Professional face lift and optimisation Maintenance and Updating of current, structured and reference content Publication of the ITHANET Interactive Haemoglobinopathy Database Workshop on using the ITHANET Portal for counselling and research Phase 3 Implementation of custom output for database queries Choice of output fields (Saveable preferences) (Saveable decorations) (Provision of preferences and decorations for common use) Implementation of multi-language support Revision of existing sections Professional face lift and optimisation Maintenance and Updating of current, structured and reference content Publication of the ITHANET Interactive Haemoglobinopathy Database Workshop on using the ITHANET Portal for counselling and research

9. 9 ITHANET + / 13 December 2008, Brussels Brainstorming Kilowhats Implementation of the database What DBMS for long-term maintenance and future expansions? What data fields? What existing content into the database? Implementation of the database interface What template to use for the sequence browser? What template to use for the output design? Implementation of wiki-based content What goes wiki? At what level do we allow user-based contributions? Kilowhats Implementation of the database What DBMS for long-term maintenance and future expansions? What data fields? What existing content into the database? Implementation of the database interface What template to use for the sequence browser? What template to use for the output design? Implementation of wiki-based content What goes wiki? At what level do we allow user-based contributions?

10. 10 ITHANET + / 13 December 2008, Brussels Brainstorming Ends and Means How to enthuse contributors? “Most active contributors” section on home page E-mailing Portal Users E-mailing conference organisers, research and clinical bodies for their details One-page field-based submission of structured content What existing stock content as short cuts for content development? Tour-de-force typing of TIF lists Sample lectures of EGF courses as streaming media Book HTMLs or “Google Books” type incorporation of text books or book sections In what shape can the set targets be achieved? Level of integration of text content with database output Level of customisability of database output Level of streamlining and polishing the Portal interface Ends and Means How to enthuse contributors? “Most active contributors” section on home page E-mailing Portal Users E-mailing conference organisers, research and clinical bodies for their details One-page field-based submission of structured content What existing stock content as short cuts for content development? Tour-de-force typing of TIF lists Sample lectures of EGF courses as streaming media Book HTMLs or “Google Books” type incorporation of text books or book sections In what shape can the set targets be achieved? Level of integration of text content with database output Level of customisability of database output Level of streamlining and polishing the Portal interface

11. 11 ITHANET + / 13 December 2008, Brussels Beyond ITHANET + How to keep partners involved as contributors? How to position ourselves for future funding? ITHANET + on the way to ITHANET 2 A flexible, fully customisable environment Future expandability of functionality and content Automatic deposition of new content by data spiders Secure storage and exchange of patient data Time-saving long-term maintenance of content How to keep partners involved as contributors? How to position ourselves for future funding? ITHANET + on the way to ITHANET 2 A flexible, fully customisable environment Future expandability of functionality and content Automatic deposition of new content by data spiders Secure storage and exchange of patient data Time-saving long-term maintenance of content