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, jenny.knapp@univ-fcomte.fr 3CNR Echinococcose Alvéolaire – WHO Collaborating Centre for prevention and treatment of echinococcosis, Besançon, France 2OSU THETA Franche-Comté Bourgogne, Besançon, France, amandine.charbonnier@univ-fcomte.fr Besançon – 27/29 March 2014

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)

Epidemiological situation in France Incident cases between 1982 et 2013 (3rd quarter) Annual incidence: 0.26 cases/1 000 000 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)

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 1997-2004 : DM1 2004-2008 : DM2/DM3 2008-2010:DM4 2010-2013 : DM3 Since 2013 : DM5 (Epi-Info-European Database) (Access/Excel) (Access) (Excel) (Excel)

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…)

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 !

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

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

Questions Financial support