Rare Disease Collaborative Networks - Cancer Genetics Group

Rare disease collaborative networks (RDCNs) have been initiated by NHS England and NHS Improvement to improve care and support for patients with rare diseases. These networks are made up of groups of providers (Rare disease collaborative centres (RDCCs)) with specialist interest in specific rare or ultra rare disorders.

Among 18 RDCNs is a an 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, 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.

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) are discussed and documented at the MDT of one of centres within the network.

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.net Adults - andrewbeggs@nhs.net Children - ronald.bremner@nhs.net
London (St Mark’s Hospital, LNWH NHS Trust)	Dr Andy Latchford, consultant gastroeneterologist	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

The other RDCNs that have been established to date across a range of specialties and disease groups are outlined here below.

RDCN	Designated providers
CDKL5	University Hospitals Bristol and Weston NHS Foundation Trust
National Refractory Coeliac Disease	Lead: Sheffield Teaching Hospitals NHS Foundation Trust Cambridge University Hospitals NHS Foundation Trust
National Rare Cystic Lung Disease	Lead: Royal Brompton Hospital (Guy’s and St Thomas’ NHS Foundation Trust) Nottingham University Hospitals NHS Trust
Hereditary Haemorrhagic Telangiectasia (HHT)	Lead: Imperial College Healthcare NHS Trust Bronglais District General Hospital, Aberystwyth King’s College Hospital NHS Foundation Trust Royal Free London NHS Foundation Trust Western General Hospital, Edinburgh, NHS Lothian
Congenital Thoracic Malformations	Royal Brompton Hospital (Guy’s and St Thomas’ NHS Foundation Trust)
Familial Pneumothorax	Lead: Cambridge University Hospitals NHS Foundation Trust Queen Elizabeth University Hospital, NHS Greater Glasgow and Clyde
Hereditary Gastrointestinal Polyposis Syndromes	Lead: St Mark’s Hospital, (London North West University Healthcare NHS Trust) University Hospitals Birmingham NHS Foundation Trust Manchester University NHS Foundation Trust Royal Infirmary of Edinburgh, NHS Lothian
UK Hyperoxaluria	Lead: Royal Free London NHS Foundation Trust Birmingham Women’s and Children’s NHS Foundation Trust Great Ormond Street Hospital for Children NHS Foundation Trust University Hospitals Birmingham NHS Foundation Trust
Juvenile Myasthenia Gravis	Oxford University Hospitals NHS Foundation Trust
Segmental Overgrowth and Vascular Malformations	Lead: Nottingham University Hospitals NHS Trust United Hospitals of Derby and Burton NHS Foundation Trust, St George’s University Hospital NHS Foundation Trust Birmingham Women’s and Children’s NHS Foundation Trust Manchester University NHS Foundation Trust Royal Free London NHS Foundation Trust
Paroxysmal Motor Disorders	St George’s University Hospitals NHS Foundation Trust
Paediatric and Primary Lymphoedema	Lead: St George’s University Hospitals NHS Foundation Trust Nottingham University Hospitals NHS Trust United Hospitals of Derby and Burton NHS Foundation Trust
Mosaic Disorders	Great Ormond Street Hospital for Children NHS Foundation Trust
Tuberous Sclerosis Complex Clinical Network	Lead: St George’s University Hospitals NHS Foundation Trust Belfast City Hospital Cambridge University Hospitals NHS Trust University Hospitals Bristol and Weston NHS Foundation Trust University Hospital of Wales Guys’ and St Thomas’s NHS Foundation Trust NHS Greater Glasgow and Clyde Great Ormond Street Hospital NHS Trust King’s College Hospital Liverpool University Hospitals NHS Foundation Trust Manchester University NHS Foundation Trust The Newcastle Hospitals NHS Foundation Trust Nottingham University Hospitals NHS Trust Sheffield Teaching Hospitals NHS Foundation Trust Royal Free London NHS Foundation Trust
Bloom Syndrome	Lead: Royal Manchester Children’s Hospital Guys and St Thomas’ NHS Foundation Trust
Adult Rare Bone Disease Network	Lead: Oxford University Hospitals NHS Foundation Trust
PTEN Hamartoma Tumour Syndrome	Lead: University Hospital Southampton London North West University Healthcare NHS Trust Cambridge University Hospital
UK Aortopathy and Arteriopathy Network	Lead: Guys and St Thomas’ Hospital NHS Trust/Kings Health Partnership, now also including Brompton NHS Trust

Further information about RCDNs is available here.

Hereditary gastrointestinal polyposis syndromes Rare Disease Collaborative Network consensus statement agreed at the RDCN meeting Birmingham 17th February 2022

Please find a link to the consensus statement agreed at the RDCN meeting in Birmingham 2022 here.

Hereditary gastrointestinal polyposis syndromes Rare Disease Collaborative Network consensus statement agreed at the RDCN meeting Birmingham 17th February 2022