Mucosal Melanoma Guidelines Project

Phase I: Ano-uro-genital Mucosal Melanoma Guidelines                             (Click here for Phase II: Sino-nasal/Head & Neck)

Over the past two years an expert Guideline Development Group (GDG) has been developing UK clinical guidelines for ano-uro-genital mucosal melanoma on behalf of Melanoma Focus. The work of the GDG is now complete, following a successful consultation process during September and October 2017. The members of the GDG are listed below. Melanoma Focus is extremely grateful to these specialists for their generous donations of skill, time and effort.

Go to the Resources Page for links to the final documents, comprising the Full Guidelines, Executive Summary, Care Pathways and supporting material.

The AUG Mucosal Melanoma Guidelines were developed in accordance with the Melanoma Focus manual Guideline Development Methodology. These methods have been accredited by NICE as complying with their AGREE II criteria for the rigorous development of evidence-based guidelines.

Given the disease’s rarity, few randomised controlled trials have been identified for mucosal melanoma, but there is a large body of information relating treatments to outcomes. The challenge has been to identify the relevance of the published data to current clinical practice and produce agreed recommendations to guide healthcare professionals and inform patients and their carers.

A Guideline Development Group was set up by Melanoma Focus in 2016, consisting of clinicians specialising in medical & clinical oncology, surgery, gynaecology, radiology and histopathology, as well as a nurse and a patient representative. The GDG was chaired by Professor Martin Gore CBE, with project management and methodological support provided by the Project Manager, Mrs Nancy Turnbull.

Following publication in June 2018, Professor Gore said:

‘As a rare and often lethal form of melanoma, without obvious risk factors and often identified only at an advanced stage, ano-uro-genital mucosal melanoma presents a major clinical challenge.

‘With few randomised controlled trials on which to base our research, we relied on the large body of evidence that relates treatments to outcomes – interpreted through the skill and experience of the expert group formed to do this work.

‘We are confident that this new guideline will mark an improvement in the knowledge available to clinicians as well as patients. Hopefully it will also provide the healthcare community with authoritative recommendations for diagnosis, prognosis and treatment, while benefiting patients and carers by helping them understand the options open to them and what to expect.

‘Given the advances now being made in the field of cutaneous melanoma, it is timely that Melanoma Focus has funded this project to improve practical knowledge of this rare subset of the disease. I believe this guideline, whose methodology is accredited by NICE, will be adopted as a standard in the UK as well as being influential internationally.

‘On behalf of the Guideline Group and the wider melanoma community, I want to thank Melanoma Focus and its Chief Executive Officer Simon Rodwell in particular, for giving us the practical support and encouragement to develop this guidance.’

The death of Professor Gore was announced on 10 January 2019. Follow this link to see a tribute by Melanoma Focus.

This initiative follows the charity’s support for a group that successfully developed guidelines for uveal melanoma, whose methodology also received accreditation from The National Institute for Health and Care Excellence (NICE) in January 2015 (click here details of the Uveal Melanoma Guidelines Project).

Membership of the Ano-uro-genital Mucosal Melanoma Guideline Development Group

Professor Martin Gore CBE Consultant Medical Oncologist and GDG Chairman Royal Marsden NHS Foundation Trust
Dr Izhar Bagwan Consultant Histopathologist Royal Surrey County Hospital NHS Foundation Trust
Dr Ruth Board Consultant Medical Oncologist Lancashire Teaching Hospitals NHS Foundation Trust
Miss Sharon Capper Macmillan Urology Clinical Nurse Specialist Christie NHS Foundation Trust
Professor Sarah Coupland Honorary Consultant Histopathologist University of Liverpool
Dr Susan Lalondrelle Consultant Clinical Oncologist Royal Marsden NHS Foundation Trust
Ms Antonia Mayberry Patient Representative Rochdale
Mr Asif Muneer Consultant Urological Surgeon & Andrologist University College London Hospitals NHS Foundation Trust
Ms Karen Nugent Honorary Consultant Colorectal Surgeon University Hospital Southampton NHS Foundation Trust
Mr Pubudu Pathiraja Consultant in Gynaecology Oncology Oxford University Hospitals NHS Foundation Trust
Dr Miranda Payne Consultant Medical Oncologist Oxford University Hospitals NHS Foundation Trust
Mr Howard Peach Consultant Plastic & Reconstructive Surgeon Leeds Teaching Hospitals NHS Trust
Mr Henry Smith Research Fellow and Rapporteur of the Guideline Development Group Royal Marsden NHS Foundation Trust
Dr Jonathan Smith Consultant Radiologist Leeds Teaching Hospitals NHS Trust
Mr Myles Smith Consultant General Surgeon & Surgical Oncologist Royal Marsden NHS Foundation Trust
Dr Sarah Westwell Consultant Clinical Oncologist Brighton and Sussex University Hospitals NHS Trust
Mr Ewan Wilson Consultant Plastic & Reconstructive Surgeon North Bristol NHS Trust
Mr Simon Rodwell Chief Executive Melanoma Focus
Mrs Nancy Turnbull Project Manager

Phase II: Sino-nasal/Head & Neck Mucosal Melanoma Guideline Project

Melanoma Focus is in the final stages of setting up a Guideline Development Group (GDG) to produce a national clinical guideline for sino-nasal/head & neck mucosal melanoma.


Mucosal melanomas are rare, representing only about 1-2% of all melanomas. 55% of all primary mucosal melanomas occur in the head and neck region, with the nose and paranasal sinuses being the most common sites. Surgery at all stages frequently involves complex decisions about risk and benefit, and the value of adjuvant treatment – drug therapy or radiotherapy – is unclear. Medical treatment of advanced melanoma is evolving rapidly and its relevance to this group of patients requires clarification. There is no agreement about diagnostic imaging techniques or follow-up protocols. There is therefore a need for clinical guidance in this area.

As the principal UK melanoma charity, Melanoma Focus has a remit to lead in the development of clinical guidance for melanoma and is well-placed to sponsor the production of a guideline for sino-nasal/head & neck mucosal melanoma. This guideline will be developed in compliance with NICE accreditation requirements and published in relevant medical journals.

This initiative follows the charity’s support for the successful development of guidelines for uveal melanoma and ano-uro-genital mucosal melanoma (see description of Phase I above). Melanoma Focus has NICE accreditation for its guideline methodology – see Guideline Development Methodology.

Composition and work of the GDG

The GDG will be led by Professor Kevin Harrington, with project management and methodological support & funding by Melanoma Focus. It will comprise approximately 12 members from appropriate specialisations and interests:

• Maxillofacial/Head & Neck Surgeon
• ENT Surgeon
• Oral & Facial Plastic Surgeon
• Medical Oncologist with an interest in melanoma
• Clinical Oncologist with an interest in head and neck oncology
• Surgeon with a major interest in melanoma
• Pathologist with expertise in melanoma and head and neck oncology
• Radiologist with expertise in melanoma and head and neck oncology
• CNS specialising in head and neck cancers
• CNS specialising in melanoma
• Patient Advocates/Representatives


We expect the process to take 18-24 months and involve 9 to 12 one-day meetings in London. The first meeting of the GDG was held in July 2018.





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