1. A NEW DATA MANAGEMENT SYSTEM FOR THE FRANCECHINO HUMAN CASES REGISTRY   Charbonnier, Amandine1,2 ; Knapp, Jenny1,3 ; Demonmerot, Florent 1 ; Bresson-Hadni, Solange 1 ; Raoul, Francis 1 ; Grenouillet, Frédéric 1 ; Millon, Laurence 1 ; Damy, Sylvie 1  
1Chrono-environment Laboratory, UMR 6249 University of Franche-Comté and CNRS, Besançon, France, 3CNR Echinococcose Alvéolaire – WHO Collaborating Centre for prevention and treatment of echinococcosis, Besançon, France 2OSU THETA Franche-Comté Bourgogne, Besançon, France,
Besançon – 27/29 March 2014

2. Alveolar echinococcosis registry : back to history
1981: Clinical reference centre for the WHO
1995: WHO Collaborating Centre for prevention and treatment of echinococcosis in the Besançon University Hospital
1997 : European Registry : registration of cases restrospectively from 1982
2003: FrancEchino network (InVS), prospective work from this date
2012: National Reference Centre for alveolar echinococcosis, 4 years, (Director: Pr. Millon – Co-director: Pr Bresson Hadni/Dr Grenouillet)

3. Epidemiological situation
in France
Incident cases between 1982 et 2013 (3rd quarter)
Annual incidence: 0.26 cases/ inhab.
No of median cases: 17 cases/year
1982 to 2013 (the 31/12/13): 573 recorded cases
No of Alveolar Echinococcosis diagnosis per year in France
(CNR EA data – the 31st of December 2013)

4. The registry on spreadsheets
Excel support, 3 spreadsheets (administrative data, epidemiology and medical data)
Major problems with Excel support :
No control of data coherence, redundancy
Low security: data, access, follow-up
Evolution of the structure of the registry
Poor capacity to connect with other databases (ecology, veterinary, mapping, etc.)
Historic of inputs in spreadsheet : multiple Data Manager (DM)
Rules definition
: DM1
: DM2/DM3
:DM4
: DM3
Since 2013 : DM5
(Epi-Info-European Database)
(Access/Excel)
(Access)
(Excel)
(Excel)

5. Model : way of communication between stakeholders
Modeling data
Model : way of communication between stakeholders
294 variables in spreadsheets / 129 in model
No more redundancy
47 tables
4 months work
New features to manage Alveolar Echinococcosis cases
History of the evolution of AE for each patient
Patient’s aftercare:
Treatment, Serology, Surgeries and Medical Imaging
More possibilities to document cases
Flexibility to add reference data (Symptom, medication, risk factor, risk region…)

6. Import data
Automatic import of reference data lists (administrative entities, occupation, risk factors …)
Checking of integrity and coherence rules on data (mandatory fields, type…)
Import of validated data
Why these rejects ?
Modification/No application of rules to input values (5 data managers)
Bad type value (>50%)
Use of unknown predefined values
Evolution of national reference data: code INSEE
Many data represent the same notion: incoherence of inputs
148 patients (26%) imported before data modification to solve rejects !

7. Data management system
Secure & online access
Public
Key statistics, Charts
Geolocation (canton level)
FrancEchino network physicians
List of patients (CNIL compliance)
Data Managers
Add, modify
Precision and coherence
(with forms, list of values,
check before submission…)
Better Quality of data !
Export data (InVS, CNR, R)
Management of data
Reference data
Validation of inputs
End-user friendly

8. Schedule & Perspectives
End of web development & beginning test with data managers
Summer 2014
Installation of the hardware : web server, online access, secure connection…
Autumn 2014
Deliver online data management system
End of 2014
Export for an external usage :
National Institute for Public Health Surveillance
Research programs
Link to other databases

9. Questions
Financial support