Mucosal Melanoma Guidelines Project

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

(Click here for Phase I: Ano-uro-genital Mucosal Melanoma)

A Guideline Development Group (GDG) has been working since mid-2018 to produce a national clinical guideline for sino-nasal/head & neck mucosal melanoma. It is led by Professor Kevin Harrington, with project management and methodological support & funding by Melanoma Focus.


The draft guideline is now complete and the consultation process has begun. We are seeking inputs from a wide range of people with experience of this condition, including clinicians, patients/carers and support groups. If you would like to be involved as a reviewer please contact the Project Manager, Nancy Turnbull. The deadline for comments is 13 December.

Please note: in the interests of transparency, comments are not anonymous. The name of the organisation will be published with the comments and the GDG response on the Melanoma Focus website at the time of publication of the guideline. We will ask for declarations of interest from all reviewers.


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.

Phase I: Ano-uro-genital Mucosal Melanoma Guidelines

An expert Guideline Development Group (GDG) was formed in 2016 to produce UK clinical guidelines for ano-uro-genital mucosal melanoma on behalf of Melanoma Focus. The group consisted of clinicians specialising in medical & clinical oncology, surgery, gynaecology, radiology and histopathology, as well as a nurse and a patient representative. It was chaired by Professor Martin Gore CBE, with project management and methodological support provided by the Project Manager, Mrs Nancy Turnbull.

The work of the GDG was completed in 2017 following a successful consultation process. Melanoma Focus is extremely grateful to the GDG members 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 faced by the GDG was 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.

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).



printer-friendly version