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Cancer Registry Rhineland Palatinate
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Notification Office
All physicians and dentists are legally obliged to report incident cancer cases to the notification office of the cancer registry. Hospital based cancer registries also report their patients to the notification office. The incoming reports (personal identification and tumour data) are checked for completeness and plausibility. Notifying doctors are contacted for further information if this is required. After coding of the tumour data it is entered and stored in a temporary database. During data entry extensive plausibility controls are conducted. Subsequently, encryption of the personal identification data by the asymmetric RSA - method takes place. Decryption requires an electronic key which is held, for security reasons, in the Data and Information Centre of Rhineland-Palatinate, a location separate to the offices of the Cancer Registry. Decryption is only possible in defined circumstances. For the purpose of record linkage so called "control numbers" are generated from some of the personal identifiers (e.g. all names, day of birthdate) using a one-way encryption technique The use of a one-way algorithm prevents any direct decryption of the personal identification data. The encrypted records are sent to the registration office, which performs record linkage and stores the encrypted data permanently. If problems with the data arise these may be resolved during a short time interval by reporting back to the notification office. The notification office may contact the reporting physician for clarification. As soon as the cases have been entered successfully into the database of the registration office all documents and all records in the temporary database concerning them are deleted.Death certificates with a tumour diagnosis are also sent to the notification office from the public health departments of Rhineland-Palatinate. They are handled in the same way as notification forms. This means that linking of a death certificate to an existing patient record is performed on the basis of "control numbers" in the registration office.
Thus the notification office does not store any data permanently. It serves
to keep contact with the reporting physicians. All employees are bound to
observe strict confidentiality. The registration office only stores encrypted
identity data. Thus a compromise between data privacy and data availability is
found. 
The cancer registry offers presentations to both physicians and to the public. Details can be found under Presentations (in German).
Further information on the notification office
and on encryption and record linkage
is to be found in our report on the pilot phase (in German).
Registration Office
In the registration office, the data received from the notification office is added to the permanent database.Using a stochastic record linkage procedure possible matches are identified and groups of records are formed. These groups are then processed at two levels
- Linking records pertaining to one person
- Linking records pertaining to one tummour
Thus it is possible to link anonymous records in order to ascertain
whether multiple reports for one person have been received and whether they
refer to the same tumour.
The registration office permanently stores both medical data and encrypted personal identifiers. Regular reports analyze the collected data, thus providing important public health information. The data will also be used for epidemiological research.
The registration office offers feedback to the notifying physicians on a regular basis. It answers inquiries of physicians. However, as the registry is not yet complete, no statement concerning cancer incidence is possible.
Further information on the registration office is to be found in our report on the pilot phase (in German).