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3rd October 2018
NICE recently released their guidance on the diagnosis and management of pancreatic cancer in adults.
UKCGG in collaboration with other bodies, including INSIGHT, have some concerns about the recommendations for screening in familial pancreatic cancer.
UKCGG wish to make the following statement regarding these guidelines:
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"You may be aware that NICE published guidelines on pancreatic cancer in February 2018. These guidelines predominantly address the diagnosis and management of pancreatic cancer, but also make recommendations on screening for gene carriers and individuals at familial risk.
Unfortunately, UKCGG was not consulted in developing these guidelines and so was not able to provide input prior to publication. We contacted NICE with our concerns when we became aware of the guideline publication specifically addressing their recommendations for screening of gene carriers (BRCA1, BRCA2, PALB2, CDKN2A, MLH1, MSH2, MSH6 and PMS2), and individuals with one or more affected relatives. We were particularly concerned that the lifetime risk of pancreatic cancer was overestimated for some genes (specifically,BRCA1, PALB2, MLH1, MSH2, MSH6 and PMS2) and secondly that the recommendations for pancreatic screening in patients who do have an increased lifetime risk are premature. NICE have replied to our concerns and the CGG Steering committee regards the response as unsatisfactory. We are planning to convene a working group with InSiGHT and the EHTG to write a review article addressing the issue further.
We do not support the recommendations made by NICE, so, in the interim, UKCGG guidance is that pancreatic screening is only undertaken within the context of a research study e.g. EUROPAC".
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Please see the comments made by UKCGG on the guidelines here.