Government recommendations for the cancer registry data

Tuesday 31 May 2016

We are working with Cancer Research UK, Macmillan Cancer Support and other cancer charities to make recommendations to Government on the subject of cancer registry data.

The voice of people directly affected is essential to this discussion and we invite anyone affected by a high grade brain tumour to take part in the review which will inform these recommendations.

If you are diagnosed with cancer, information about you and your condition is registered by NHS health and social care providers from the point of diagnosis onward.
The review will address how people affected by cancer in England can be better informed about how their cancer data is used and how they choose whether their data is used or not.

It is our ambition to enable every patient to be a research patient. Cancer data provides an opportunity for each person with a brain tumour to contribute to the improvement of diagnosis, treatment and care for everyone affected by a brain tumour.

You can read more about how cancer data is collected, stored and released.

Cancer Research UK, Macmillan Cancer Support and others will be hosting a series of workshops in addition to the survey.

If you would like to attend a workshop please email

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