11 September 2023 (Last updated 11 Sep 2023)

Those who attended the Genomics session at the ACPGBI 2023 Annual Meeting in Manchester will be aware that NHS England has established a Rare Disease Collaborative Network for hereditary gastrointestinal polyposis syndromes (covering adenomatous polyposis syndromes, Peutz-Jeghers syndrome, juvenile polyposis syndrome and other ultra-rare Mendelian polyposis syndromes). There are currently seven centres in the network (see contact details below), each of which has a sufficient caseload to build expertise, run a polyposis MDT and support research activity across the network. There is also a monthly national MDT, bringing all the centres together.

A recently published consensus statement recommends that ideally all patients and families with a hereditary gastrointestinal polyposis syndrome should have their care delivered by one of these centres, with local pathways being developed to facilitate referral. If care is provided outside of the network, key aspects (such a timing and type of risk reduction surgery, endoscopic management of polyps and management of extra-intestinal manifestations) should be discussed and documented at the MDT of one of centres within the network. We therefore strongly recommend that anyone caring for patients with these rare conditions outside of the network liaise with their nearest centre to ensure that this is achieved.

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