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ESID Online Database for Primary Immunodeficiency Diseases User Manual
Table of contents
1
2
Introduction.......................................................................................................... 4
1.1
Background Information ............................................................................... 4
1.2
Classification of diseases ............................................................................. 5
1.3
Core Dataset and disease-specific data forms ............................................. 5
1.4
Pseudonymisation ........................................................................................ 6
1.5
Data access, research collaborations........................................................... 6
1.6
Publications .................................................................................................. 7
Requirements to participate................................................................................. 8
2.1
System Requirements .................................................................................. 8
2.2
Legal Requirements ..................................................................................... 8
2.2.1
Database agreement and application forms.......................................... 8
2.2.2
Informed patient consent....................................................................... 9
2.2.3
Data protection and ethics approval...................................................... 9
3
Productive and test version ............................................................................... 10
4
Working with the Database System................................................................... 11
4.1
Accessing the system................................................................................. 11
4.2
Menu page ................................................................................................. 13
4.2.1
Top panel items................................................................................... 13
4.2.2
Side panel items.................................................................................. 16
4.3
4.3.1
General, Diagnosis, QoL ..................................................................... 16
4.3.2
Ig-replacement & Antibiotics................................................................ 18
4.3.3
Other treatment & Adverse events ...................................................... 19
4.3.4
Laboratory values................................................................................ 19
4.3.5
Concomitant diseases ......................................................................... 20
4.3.6
Infections............................................................................................. 20
4.4
Documentation: Guidelines and features ................................................... 21
4.4.1
General guidelines .............................................................................. 21
4.4.2
Field definitions (ToolTips) .................................................................. 21
4.4.3
Editable drop-down menus.................................................................. 21
4.4.4
ICD-10 entries ..................................................................................... 22
4.5
5
Core Dataset forms .................................................................................... 16
Main Registry ............................................................................................. 23
Contact details................................................................................................... 24
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