Because we believe strongly in the importance of access to reliable data for kidney cancer, KCSN is a member of the Cancer52 Access to Data Working Group. This group meets quarterly to investigate means of ensuring public access to clinical data held by Public Health England (PHE) for rare and less common cancers.

The group has worked with PHE’s National Cancer Registration and Analysis Service (NCRAS) to produce two films. The first is a short (8 minute) montage film featuring many of the leaders in cancer data giving their views on the importance of access to data. It covers Cancer52’s presence alongside the team from use MY data at NCRAS’s Cancer Services, Data and Outcomes Conference 2018 in Manchester at the end of June. This film explains why data is critical.

The second longer film is to ensure that all the learnings from the Cancer52 workshop, Getting data out for rare and less common cancers, organised with NCRAS and Brainstrust, could be shared with rare and less common cancer patient groups and charities, not just those who could attend the conference. This film helps charity members of Cancer52 understand the process for (literally) getting more rare or less common cancer data out of PHE.

Sharon Kell is working with NCRAS on a project to access clinical data for clear cell renal cell carcinoma (RCC) and rare subtypes of RCC. We will keep you informed of the progress of this project.

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