“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, neither InSiGHT nor UKCCG was consulted in developing these guidelines and so were 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 (STK11, CDKN2A, MLH1, MSH2, MSH6 and PMS2). We were particularly concerned that the lifetime risk of pancreatic cancer was overestimated for some genes (specifically, 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 has replied to our concerns and InSiGHT Council regards the response as unsatisfactory. We are planning to convene a working group with UKCCG 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, InSiGHT guidance is that pancreatic screening is only undertaken within the context of a research study”.