Progress report of the ESID online registry Bodo Grimbacher, MD Head of ESID patient registries

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. Security and Dataprotection Concept and architecture of an internet based ESID database network

Consent form for patients available in 17 languages

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

The ESID Main Registry

The ESID Main Registry

Show all Patients The ESID Main Registry

The ESID Main Registry

Building up lists

The ESID Main Registry

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

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

The DGS Subregistry

Time schedule June 15th, 2004 ESID main registry online October 2004CVID subregistry online October 2004DGS subregistry online October 2004IPEX subregistry online January 2005NBS subregistry online January 2005ICF subregistry online February 2005HIES subregistry online February 2005ICOS subregistry online February 2005drug-induced hypogamma online Summer 2005SCID subregistry TEST online Summer 2005XLA subregistry TEST online Summer 2005HIGM subregistry TEST online Summer 2005IgAD subregistry TEST online Summer 2005Osteopetrosis subregistry TEST online

Functionalitis of the database ICD-10 code implementationactive Extensible drop-downs [+]active Tool-Tips: exact definition of fields [?]active Mutation detection Toolactive Color codingactive Report-generation Toolactive SQL query Toolactive Recall-function06/2005 Query by Example Tool06/2005 Easy doable Free-Query tool2006

The CVID Subregistry

Functionalitis of the database ICD-10 code implementationactive Extensible drop-downs [+]active Tool-Tips: exact definition of fields [?]active Mutation detection Toolactive Color codingactive Report-generation Toolactive SQL query Toolactive Recall-function06/2005 Query by Example Tool06/2005 Easy doable Free-Query tool2006

[+] and [?]

Functionalitis of the database ICD-10 code implementationactive Extensible drop-downs [+]active Tool-Tips: exact definition of fields [?]active Mutation detection Toolactive Color codingactive Report-generation Toolactive SQL query Toolactive Recall-function06/2005 Query by Example Tool06/2005 Easy doable Free-Query tool2006

The IPEX Subregistry

ESID Mutation Web Service

Functionalitis of the database ICD-10 code implementationactive Extensible drop-downs [+]active Tool-Tips: exact definition of fields [?]active Mutation detection Toolactive Color codingactive SQL query Toolactive Report-generation Tool06/2005 Recall-function06/2005 Query by Example Tool06/2005 Easy doable Free-Query tool2006

Functionalitis of the database ICD-10 code implementationactive Extensible drop-downs [+]active Tool-Tips: exact definition of fields [?]active Mutation detection Toolactive Color codingactive SQL query Toolactive Report-generation Tool06/2005 Recall-function06/2005 Query by Example Tool06/2005 Easy doable Free-Query tool2006 please send an to:

Functionalitis of the database ICD-10 code implementationactive Extensible drop-downs [+]active Tool-Tips: exact definition of fields [?]active Mutation detection Toolactive Color codingactive SQL query Toolactive Report-generation Tool09/2005 Recall-function10/2005 Query by Example Tool12/2005 Easy doable Free-Query tool2006

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

Functionalitis of the database ICD-10 code implementationactive Extensible drop-downs [+]active Tool-Tips: exact definition of fields [?]active Mutation detection Toolactive Color codingactive SQL query Toolactive Report-generation Tool09/2005 Recall-function10/2005 Query by Example Tool12/2005 Easy doable Free-Query tool2006

Number of Patients per Documenting Center

Number of entries per diagnosis

Subregistries

Info for ESID members Bonus system:  Compensation for secretarial assistance (EUR 10 per patient per year if documented by Jun.30th, 2005)  Publication award 2005 of max. EUR for the best publications using data of the ESID Registry  2005 Travel 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  Extra EUR 2000 for the first 15 centers to reach 50 fully documented patients

The database network taking clinical patient registries to the next level..... Bodo Grimbacher, MD University Hospital Freiburg Head of ESID patient registries