NHS England has established a Rare Disease Collaborative Network (RDCN) 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 multidisciplinary team (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. It is therefore strongly recommended that anyone caring for patients with these rare conditions outside of the network liaise with their nearest centre to ensure that this is achieved.
Network contact details
| Centre | Lead | Contact details for referral |
| Edinburgh (Western General hospital) | Miss Farhat Din, consultant colorectal surgeon | Farhat.Din@nhslothian.scot.nhs.uk |
| Cardiff (Cardiff and Vale University Health Board) | Miss Rachel Hargest, consultant colorectal surgeon | Polyposis.colorectal.CAV@wales.nhs.uk |
| Manchester (Manchester Foundation Trust) | Dr Fiona Lalloo, consultant in clinical genetics | mft.manchesterpolyposis@nhs.net |
| Birmingham (Queen Elizabeth Hospital) | Prof Andew Beggs, consultant colorectal surgeon | Genetics – wmfacs@nhs.netAdults andrewbeggs@nhs.netChildren ronald.bremner@nhs.net |
| London (St Mark’s Hospital, LNWH NHS Trust) | Dr Andy Latchford, consultant gastroenterologist | LNWH-tr.smcfic@nhs.net |
| Southampton (University Hospital Southampton NHS trust) | Dr Lucy Side, consultant in clinical genetics | uhs.polyposisteam@uhs.nhs.uk |
| Exeter/Plymouth (Royal Devon and Exeter Hospital and Derriford Hospital) | Mr Frank McDermott, consultant colorectal surgeon | rduh.lynch-polyposis@nhs.net |
RDCN consensus statement
NHS England set out in the Implementation Plan for the UK Strategy for Rare Diseases that it would develop and implement Rare Disease Collaborative Networks (RDCNs), with the definition of a RDCN being a ‘recognised network of member providers, each of which has demonstrable research-active interest in a rare/very rare disease, the aim of the network being to improve patient outcomes’. The network is composed of Rare Disease Collaborative Centres. A Rare Disease Collaborative Centre (RDCC) is a ‘provider that has been recognised as having a demonstrable research-active interest in a rare/very rare disease and who works with other recognised providers in a network to improve patient outcomes’.
This initiative is also in line with the NHS England Board paper ‘12 Actions to Support and Apply Research in the NHS’ discussed on 30 November 2017.