by Simon Rodwell | 12 June 2017 14:50
The purpose of Melanoma Focus is to commission and fund innovative research, while providing support and information for patients, carers and healthcare professionals. Under this banner, our activities are grouped in four main areas: Patient Support, Clinical Research, National Projects and Professional Education. These are described below, together with links to relevant pages on this website.
In January 2017 we set up our Melanoma Helpline, operated by a team of skin cancer nurse specialists who provide general assistance, information and emotional support to callers.
Our recently-launched Patient Decision Aid, the product of an expert steering group led by Dr Mark Harries, is designed to help melanoma patients make essential choices about their treatment. It describes the stages of the disease, together with information on key topics such as sentinel lymph node biopsy, drug therapies and their side effects, as well as other available treatment options.
Melanoma Focus produces reference material about melanoma and its prevention and detection, including a booklet Melanoma: What it is and How to Reduce your Risk, which is available to order. We also plan to produce a video about melanoma in the year ahead.
Within the Melanoma Focus Patient Impact Programme, we commission and fund melanoma studies of various types, regularly calling for proposals from melanoma researchers. Our Scientific Committee, led by Professor Mark Middleton, evaluates the responses and makes recommendations for the grant of awards.
Studies under this scheme are based at the universities of Dundee, Leeds, Newcastle and Stirling. Some of these address complex scientific questions – such as a study looking at how changes in proteins in the skin can predict the risk of melanoma metastasising – while others are aimed at improving public knowledge of melanoma, its risks and prevention. Given the rising incidence of melanoma in young age groups, we are particularly interested in education amongst younger people.
Other research currently being funded by the charity includes melanoma incidence in flight crews (in conjunction with a Brisbane-based cancer centre) and a study investigating a rare form of melanoma in the orbit of the eye.
This heading covers the work we do in developing and publishing clinical guidelines including cutaneous and rarer forms of melanoma.
In 2015 our National Clinical Guidelines for Uveal Melanoma (also known as ‘optical melanoma’) were completed. This project was chaired by Dr Paul Nathan and published in the European Journal of Cancer. It received accreditation by The National Institute for Health and Care Excellence (NICE).
We are currently funding further guidelines for another rare subset of the disease, to create National Clinical Guidelines for Mucosal Melanoma. The guideline development group, led by Professor Martin Gore, expects to embark on the consultancy phase of their work in mid-2017, with a view to completing a NICE-accredited report later in the year. The first phase of this project deals with ano-uro-genital mucosal melanoma; we plan that this will be followed by guidelines for sino-nasal melanoma.
Another of our projects is the creation of a National Melanoma Database. We work in conjunction with a number of NHS Trusts to capture and store anonymised information about melanoma patients, their treatments and their outcomes. This project involves the development of specialist software and the funding of data administrators at each collaborating site. More than 11,000 patient records have been logged so far. As well as allowing the real-time use of the data in clinic, the result will be a unique source of valuable material that will be made available to melanoma researchers.
The charity is also involved in public consultation concerning various aspects of melanoma medicine including the championing of patients’ interests. We have recently interceded successfully with Government for access for patients to new drug combinations. We routinely provide expert witnesses for NICE technology appraisals of melanoma treatments and we are part of the House of Commons Melanoma Taskforce.
Melanoma Focus organises two major annual melanoma conferences. Our Regional Meeting, which takes place in May, is hosted each year by one of the UK’s main melanoma centres, while our Focus Meeting Study Day in October in London is the UK’s principal melanoma event for healthcare professionals, attracting up to 250 specialists including clinicians, surgeons, scientists, nurses and students.
As part of the continuing professional development (CPD) programmes run by clinical organisations, these meetings are accredited by the Royal College of Physicians and Royal College of Surgeons; they are endorsed by the Association of Cancer Physicians, the British Association of Dermatologists, the British Association of Plastic, Reconstructive and Aesthetic Surgeons, the British Association of Skin Cancer Specialist Nurses and the National Cancer Research Institute.
How we are Supported
The charity’s activities are directed and supported by our board of eleven Trustees, all of whom are melanoma clinicians and scientists of international renown. Funding comes from personal and charitable sources, as well as from pharmaceutical and other corporate and grant-giving organisations. We rely to a great extent on the encouragement and participation of our growing band of supporters representing patients, carers and the general public.
If you would like to support our work, please go to Guide to Fundraising where you will find details of how you can contribute.
Source URL: https://melanomafocus.com/activities/summary-what-we-do/
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