What is the MyMelanoma project about?
Every day in the UK, 50 people are diagnosed with melanoma of the skin, and melanoma continues to be of concern around the world.
Despite considerable improvements in the treatment of melanoma in recent years much needs to be done to improve the quality of care internationally. MyMelanoma is designed to build a large, anonymized database which researchers around the world will be able to use to understand how to deliver that improvement, in as fast a time as possible.
MyMelanoma is the most ambitious data collecting project ever performed internationally, linking data entered online by at least 20,000 patient participants with their data stored in the NHS.
As the project develops then the database will also include data generated from examination of blood, stool and tumour samples.
MyMelanoma is a unique collaboration between patients, the NHS, research scientists and NHS Digital, for the benefit of melanoma patients everywhere.
Who can take part?
Any person who is at least 16 years old and has been treated for melanoma of the skin or mucosal surfaces (excluding melanoma of the eye) at any time in the NHS (You must still live in England, Northern Ireland, Scotland or Wales).
Participants need to have access to a smart phone or computer in order to complete the questionnaires and to communicate with the MyMelanoma team.
Why should I take part in MyMelanoma?
It is difficult for one research group to build studies of sufficient size to produce clear unequivocal results when addressing specific questions. That is where MyMelanoma is different.
Our pioneering study will be the largest ever conducted in the UK, led by experts across the country. We have created a truly collaborative study to accelerate our research, answering the questions most important to melanoma patients, as identified through extensive consultation.
But we need your help to achieve these goals, through enrolling in the MyMelanoma study, answering our research questionnaire and taking part in further studies, if you are selected based on your eligibility.
Taking Part in MyMelanoma:
During the sign-up process you will be asked to read a ‘patient information sheet’ providing in-depth details about taking part. The information provided is very detailed in order that you can understand all that will be done with your data and what you would be asked to do. As the information is so detailed, we have made three short videos that you might want to view first. If you do then decide that you do want to take part, then you will be asked to consent to join online. During consenting you would be asked to add your NHS number and stage of your melanoma, but don’t worry if you struggle with either, the MyMelanoma team will be able to help.
After this, you will be able to complete two questionnaires about your medical and family history and various aspects of your lifestyle. Some people will be asked to consider providing blood, saliva and/or stool (faeces) samples, but you don’t need to agree to that if you don’t want to.
Using your data for research:
The information MyMelanoma will collect from participants is required to answer important questions around melanoma such as:
- What causes melanoma?
- What lifestyles affect relapse of melanoma?
- Do incidental drugs taken for other aspects of health moderate the risk of relapse?
- What inherited genes have an effect on risk?
- Can we develop a test which shows who would benefit from a particular drug treatment for melanoma?
- Can we improve tests to predict outcomes for melanoma patients?
- Having had a melanoma and treatment impacts on how we feel, so MyMelanoma will also collect information on quality of life.
Information taken from Home - MyMelanoma (mymelanomastudy.org)