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Progress report of the ESID online registry

Progress report of the ESID online registry. www.esid-registry.org. Bodo Grimbacher, MD Head of ESID patient registries. Security and Dataprotection. Concept and architecture of an internet based ESID database network.

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Progress report of the ESID online registry

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  1. Progress report of the ESID online registry www.esid-registry.org Bodo Grimbacher, MD Head of ESID patient registries

  2. Security and Dataprotection Concept and architecture of an internet based ESID database network • Input requires a positive statement from the local data protection officer and a signed consent from the patient(s) or legal tutor (approved form provided in 9 languages) • SSL encrypted data transmission • Secure Server Net (audited Firewall of the Hospital of Freiburg) • User-Role Authentication • Passwords are stored in encrypted form • Multiple-User-Roles restrict views and presented data • Patient randomization (patient ID’s) • Only coded data allowed (ONLY the patient’s physician can match a specific data-set with his patients) • No demographical data or ‘free text’ that potentially directly identifies the patient is stored in the system • Implementation of the ‘2-server solution’ • Thereof follows: • - Signed consent form from patients • Positive statement of ethics and data protection • - Agreement between ESID and documenting centre • e.g. on core dataset (red fields) etc.

  3. Consent form for patients available in 17 languages

  4. Signed by 46 documenting centers from 24 countries Agreement ESID Documenting Center

  5. http://www.esid-registry.org The ESID Main Registry

  6. The ESID Main Registry http://www.esid-registry.org

  7. The ESID Main Registry Show all Patients

  8. The ESID Main Registry

  9. Building up lists

  10. The ESID Main Registry

  11. ESID-main vs. ESID-subregistries Please document EITHER the core dataset (red fields are subject to financial compensation) OR the complete patient chart below.

  12. ESID Main Registry & Subregistries CVID Subregistry DGS Subregistry NBS Subregistry XLA Subregistry HIGM Subregistry SCID Subregistry Neutropenia Subregistry ...additional Subregistries ESID Main Patient Registry

  13. The DGS Subregistry

  14. Time schedule June 15th, 2004ESID mainregistry online October 2004CVIDsubregistry online October 2004 DGS subregistry online October 2004 IPEX subregistry online January 2005 NBS subregistry online January 2005 ICF subregistry online February 2005 HIESsubregistry online February 2005 ICOS subregistry online February 2005 drug-induced hypogammaonline Summer 2005 SCID subregistry TEST online Summer 2005 XLA subregistry TEST online Summer 2005 HIGM subregistry TEST online Summer 2005 IgAD subregistry TEST online Summer 2005 Osteopetrosis subregistry TEST online http://www.esid-registry.org/TEST.jsp

  15. Functionalitis of the database ICD-10 code implementation active Extensible drop-downs [+] active Tool-Tips: exact definition of fields [?] active Mutation detection Tool active Color coding active Report-generation Tool active SQL query Tool active Recall-function 06/2005 Query by Example Tool 06/2005 Easy doable Free-Query tool 2006

  16. The CVID Subregistry

  17. Functionalitis of the database ICD-10 code implementation active Extensible drop-downs [+] active Tool-Tips: exact definition of fields [?] active Mutation detection Tool active Color coding active Report-generation Tool active SQL query Tool active Recall-function 06/2005 Query by Example Tool 06/2005 Easy doable Free-Query tool 2006

  18. [+] and [?]

  19. Functionalitis of the database ICD-10 code implementation active Extensible drop-downs [+] active Tool-Tips: exact definition of fields [?] active Mutation detection Tool active Color coding active Report-generation Tool active SQL query Tool active Recall-function 06/2005 Query by Example Tool 06/2005 Easy doable Free-Query tool 2006

  20. The IPEX Subregistry

  21. ESID Mutation Web Service

  22. Functionalitis of the database ICD-10 code implementation active Extensible drop-downs [+] active Tool-Tips: exact definition of fields [?] active Mutation detection Tool active Color coding active SQL query Tool active Report-generation Tool 06/2005 Recall-function 06/2005 Query by Example Tool 06/2005 Easy doable Free-Query tool 2006

  23. Functionalitis of the database ICD-10 code implementation active Extensible drop-downs [+] active Tool-Tips: exact definition of fields [?] active Mutation detection Tool active Color coding active SQL query Tool active Report-generation Tool 06/2005 Recall-function 06/2005 Query by Example Tool 06/2005 Easy doable Free-Query tool 2006 please send an Email to: frisch@medizin.ukl.uni-freiburg.de

  24. Functionalitis of the database ICD-10 code implementation active Extensible drop-downs [+] active Tool-Tips: exact definition of fields [?] active Mutation detection Tool active Color coding active SQL query Tool active Report-generation Tool 09/2005 Recall-function 10/2005 Query by Example Tool 12/2005 Easy doable Free-Query tool 2006

  25. Documentalist/Physician/User Accesses Web App Sends data collection to user Web Application Firewall 1 Firewall 2 Application Server WebApp retrieves data from the cD Database WebApp retrieves patient data from the PL Database coded Data (cD) Patient List (PL) DB Server 2 DB Server 1

  26. Functionalitis of the database ICD-10 code implementation active Extensible drop-downs [+] active Tool-Tips: exact definition of fields [?] active Mutation detection Tool active Color coding active SQL query Tool active Report-generation Tool 09/2005 Recall-function 10/2005 Query by Example Tool 12/2005 Easy doable Free-Query tool 2006

  27. Number of Patients per Documenting Center

  28. Number of entries per diagnosis

  29. Subregistries

  30. Info for ESID members Bonus system:  Compensation for secretarial assistance (EUR 10 per patient per year if documented by Jun.30th, 2005) 2005Travel grants to ESID meetings and summer school: 3 x EUR 500 for the center with the most registered patients 2 x EUR 500 for the center with the second most registered patients 1 x EUR 500 for the center with the third most registered patients  Publicationaward 2005 of max. EUR 15.000 for the best publications using data of the ESID Registry Extra EUR 2000 for the first 15 centers to reach 50 fully documented patients

  31. The database networktaking clinical patient registries to the next level ..... Bodo Grimbacher, MD University Hospital Freiburg Head of ESID patient registries grimbacher@medizin.ukl.uni-freiburg.de

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