Skin cancer patients sought for major online research study

The MyMelanoma study is the most ambitious melanoma research project undertaken in the UK and aims to recruit 20,000 melanoma patients to answer the most important questions about the cancer and its treatment.

The study is led by the University of Oxford, funded by Cancer Research UK and Melanoma Focus and delivered with the support of the National Institute for Health and Care Research (NIHR).

Any person who has received NHS treatment for skin melanoma can volunteer for the study, which involves completing two online questionnaires about their lifestyle, health and personal and family cancer history.

The information will be linked with participants’ NHS records to build a global database. All data will be stored anonymously so that participants cannot be identified. More than 1,500 people have already volunteered to take part.

Melanoma skin cancer is the 5th most common cancer in the UK, accounting for 4% of all new cancer cases, with around 16,700 new cases every year.

Mark Middleton, Professor of Experimental Cancer Medicine at the University of Oxford and the study’s lead researcher said: “There is still much that needs to be done to improve the quality of melanoma patient care internationally.

“MyMelanoma aims to help researchers understand how to deliver that improvement as quickly as possible. It has the potential to help us find new drug treatments, as well as give us a better understanding of factors that influence relapse, genetic links to other cancers and the impact on quality of life that melanoma has.

“This trial is an important step forward in skin cancer research and we urge anyone with a history of melanoma to take part.”

A new mole or a change in an existing mole may be signs of melanoma, which is usually caused by sunburn or using sunbeds. Although most people are treated effectively with surgery, melanoma can spread to other parts of the body, and melanoma can be deadly. People with pale skin, red or blonde hair, blue or green eyes and a large number of freckles or moles are at more risk but melanoma can affect people with all skin types.

Among those who have joined the study is Ernesto Rogata, 59, of Harrogate, Yorkshire. The melanoma on his chest was initially misdiagnosed while living in Rome, Italy in 1996, and only diagnosed as cancer two years later.

Ernesto, a video editor for Sky UK, said: “We gave the cancer a massive 18 months advantage. By the time I was diagnosed my melanoma was stage four so it was very deep into the skin and tissue.”

The cancer spread to his lung, bowel and stomach. Between 1998 and 2004 Ernesto had extensive surgery and then-new immunotherapy treatment, leaving him cancer-free by 2005.

He said of its cause: “It was probably sun exposure related, we will never know. When I was a child in Italy in the 1970s there wasn’t much attention to using sun cream compared to now. Another factor is I have a lot of moles, more than 100.”

Ernesto said of the trial: “It is all about giving the scientists and statisticians more data directly from the patient.

“Melanoma is a very difficult type of cancer to cure and manage so giving the scientists and researchers data directly from the people affected is crucial.”

Originally set up by the University of Leeds, the MyMelanoma study is now a partnership between the University of Oxford and the University of Highlands and Islands.

Julia Newton-Bishop, Professor of Dermatology at the University of Leeds, said: “The research questions MyMelanoma is asking came directly from patients, so we know that this study is really important to those affected by the disease.

“We’re hoping that as many patients as possible will join our study, because their invaluable contributions will further our understanding of this disease, and help us to develop better treatments.”

For more information, including how to join the trial, visit www.mymelanomastudy.org.

Participating in health research helps develop new treatments, improve the NHS, public health and social care and save lives.

The NHS, public health and social care supports research by giving patients opportunities to take part in trials. Healthy people can also take part so results can be compared to those with a medical condition.

Learn more about taking part in research and search for studies at https://bepartofresearch.nihr.ac.uk/