We are extremely grateful to the late Professor Gore who was instrumental in completing the Ano-uro-genital Mucosal Melanoma Guidelines as the Chairman of the group.
He made this statement following its completion in 2018:
“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.’
GDG Chairman Professor Kevin Harrington also noted:
‘Head & Neck Mucosal Melanoma (HNMM) is a rare condition that can be devastating and life-changing for patients, as well as for their families and friends. However information about the disease is scarce and mostly based on experience of melanoma in general, or of the common types of cancer that involve the head and neck. There have been very few randomised controlled trials that involve patients with HNMM when compared with melanoma affecting the skin. Therefore, there is only a small evidence-base with which to work. In the face of these challenges, the GDG was forced to draw on evidence that came almost exclusively from observational studies. In reviewing and evaluating these sources, NICE-accredited methodology in the form of a series of PICO questions was used to impose the necessary scientific rigour on the process.
The product of these exhaustive deliberations – the HNMM Guideline – will endure for many years and will be updated regularly under Melanoma Focus auspices. It will help clinicians in the UK and beyond to understand how to diagnose and treat this often deadly disease. These conclusions are also intended for use by patients, with a lay version written in non-scientific language produced to accompany the main document.
Especially in a situation where there was a dearth of hard scientific evidence, the skill of the GDG members was paramount – both in interpreting the limited data and in drawing on their own clinical experience of treating people suffering from this disease. The members of the group gave freely of their time in a complex task that took them away from their already busy working lives. They did this generously and on an entirely pro bono basis, aided by valuable input from patient and carer representatives.
I wish to record my thanks to all those involved – clinicians, nurses, patients, as well as to the many organisations and individuals who contributed their wisdom and knowledge in reviewing our findings during the consultation process. I also wish to extend my thanks to the team at Melanoma Focus for having the vision to commission these guidelines and for its support in facilitating meetings and during the process of drafting the guideline documents.’
