Effective use of access to external data storage systems in the cancer registry of North Rhine-Westphalia (NRW) Epidemiological Cancer Registry of North Rhine-Westphalia Germany
North Rhine-Westphalia (NRW), Germany - Westphalia North Rhine
North Rhine-Westphalia: Population and Cancer cases North Rhine Region Westphalia Region Population Size (approx.) 9.6 Mio. 8.4 Mio. Expected cases /yr 51.000 44.000 Total 18 Mio. 95.000
Cancer registration in NRW July 2005: Start of the Epidemiological Cancer Registry of NRW coverage of entire NRW (18 Mio. inhabitants) Building on the Cancer Registry of Muenster (1985-2005, 2.6 Mio. inhabitants)
Legal requirements for Notifications notifications are mandatory have to be submitted electronically - either direct to the registry or - via a central oncological database (preferred) Personal identifiers must be encrypted
System of Notification: Objectives of Implementation achieve completeness in an efficient time achieve broad acceptance by avoiding double ascertainment assure legal aspects of data protection of personal identifiers
Sources of Notifications in NRW 83 pathology institutes 340 relevant hospitals - 180 in Westphalia - 160 in North Rhine 64 active 160 active Practitioners of various fields, e.g. Dermatologists
System of Notification: Basic structure RAS PSN Notifications RAS PSN: Private Secure Net RAS: Remote access service
System of Reporting: Medical Practices Documentation software provided by registry [EpiCAN]) EpiCAN identifies new cancer patients in existing database via ICD codes provides an user interface for additional documentation exports all new cases via RAS / PSN to the registry
System of Reporting: Pathology Institutes Relevant reports are flagged as malignant tumor Reports are saved in a specified file with standardized structure Additional documentation required: place of residence Data is submitted by registry supplied software directly to PSN via RAS
System of Reporting: Hospitals Hospitals report cancer cases with PID to the central database ONDIS via RAS ONDIS automatically extracts new cancer cases for export to cancer registry Data transmission via PSN to registry Established in the region of Westphalia (160 hospitals out of 180) Comparable concept for North Rhine in preparation ONDIS = ONcological Data Information System
ONDIS: Oncological Database Mainly hospital based Central database with clinical data Established in the region of Westphalia (160 hospitals out of 180) Comparable concept for North Rhine in preparation ONDIS = ONcological Data Information System
Current state of Registration Notifications 2005 (June Dec) 2006 2007 (Jan July) Total July 2007 3.820 173.748 162.327 339.895 No. of tumors after record-linkage 2004 2005 2006 21.404 30.431 79.794 Completeness: ~ 80 %
Some difficulties to overcome in NRW Complexity of different interfaces with different IT-systems Non-availability of central external storage systems in the region of North Rhine Financial Aspects, e.g. funding of interfaces launch financing? running expenses?
Thanks to my co-authors: Hans-Werner Hense Klaus Kraywinkel Volker Krieg Rainer Fricke www.krebsregister.nrw.de info@krebsregister.nrw.de