Confidentiality

Registration

Registration is the only way we can see how many, and what types, of cancer people are getting. Most countries have a cancer registration system. The system has been running in the UK for over 50 years. This information has helped researchers identify the causes of some cancers, to look at how patients are treated across the UK, and to assess the success of different types of treatment. The cancer registries follow strict guidelines on the collection and use of patient identifiable data, and explicit patient consent is not currently required.

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Data Transfer

The registration section of the WMCIU receives and requests data from a wide range of sources (Data Collection). All data sent to the WMCIU should be transferred in line with the WMCIU’s confidentiality policy. In practice this requires the data to be sent via the postal service ‘double wrapped’, i.e. an envelope placed within another envelope, and with both envelopes addressed to a named contact and marked confidential. Data in electronic format are sent on encrypted password protected disks via the postal service as above. Confidential data is not sent by fax or e-mail.

Data Release

The registration section only releases limited confidential information, to organisations who submit data to the WMCIU, for quality assurance purposes. These organisations only receive information relating to their own patients. All other data releases are managed by the Research and Information section.

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