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Clinical management guidelines

Hereditary cancer genetics
National

UK CGG gene specific management guidance

UK Cancer Genetic Group Guidelines for the management of patients with hereditary tumour predisposition can be found here - UKCGG leaflets and guidelines - Cancer Genetics Group. This includes management guidelines for patients with:

  • Familial Adenomatous Polyposis (APC)
  • Lynch syndrome (MLH1, MSH2, MSH6, PMS2, EPCAM)
  • Juvenile polyposis (SMAD4, BMPR1A)
  • Haematological malignancy predisposition (ANKRD26, CEBPA, DDX41, ETV6, GATA2, RUNX1) - includes patient facing resources
  • Hereditary Breastand/or Ovarian Cancer (BRCA1, BRCA2, PALB2, RAD51C, RAD51D, CHEK2, ATM, BRIP1)
  • Hereditary Diffuse Gastric Cancer (CDH1)
  • DICER1-tumour predisposition syndrome
  • BAP1-tumour predisposition syndrome
  • Birt Hogg Dube syndrome (FLCN)
  • Li Fraumeni Syndrome (TP53)
  • Hereditary papillary type 1 renal cancer (MET)
  • FH tumour predisposition syndrome (Hereditary Leiomyomatosis and Renal Cell Cancer)
  • Von Hippel-Lindau disease (VHL)
  • PTEN-hamartoma tumour syndrome (encompasses Cowden syndrome, Bannayan-Riley-Ruvalcaba syndrome and Proteus-like syndrome)

Neurofibromatosis type 1

Neurofibromatosis 1 (NF1) is an inherited neurocutaneous disease that predisposes affected individuals to the development of benign and malignant tumours. The disease mainly involves the skin and nervous system but people with NF1 can develop a wide range of rare complications. In Scotland, patients should be managed as per the guidance produced by the NF1 complex service in Manchester.

Further information on the NF1 complex Service delivered by the specialist centre in Manchester is available here including referral criteria.

The following support groups are also recommended:

Editorial Information

Last reviewed: 16/12/2025

Next review date: 16/12/2026