MyMelanoma is an extremely large study of melanoma patients being treated in the UK National Health Service. MyMelanoma will collaborate with other researchers internationally when appropriate
The knowledge of the biological basis of melanoma and its treatment has increased enormously as a result of international research in the last 30 years. This progress has escalated in very recent years, resulting in the transformation of treatment of advanced disease (American Joint Committe on Cancer, AJCC stage IV) from a disease which was almost universally fatal to one in which 50% of patients benefit from immunotherapy.
MyMelanoma will build a cohort of 20K melanoma patients using digital data entry and NHS records of consenting patients, to answer the key remaining questions as we see them in 2021. Melanoma survivors have contributed to the debate around priorities for research and MyMelanoma will continue to be driven by patients whose voices will continue to be heard by the MyMelanoma Board and the MyMelanoma Information section of this website.
The work which has led to the current situation for melanoma patients took place in studies of smaller numbers of patients, and each looked at relatively simple questions eg does drug A help more than drug B? Now the questions are more complicated eg how can we identify which patients will do best with drug A and which would do best with drug B? These questions are especially complicated because the evidence suggests that the answer to this and many other questions is that a range of factors will need to be taken into account. Factors such as the genetic inheritance of the patient, the different genetic changes in their cancer cells, the patients' lifestyles. Whenever scientists look at complicated multifaceted interactions, then the necessary size of the study needs to be much greater. This is the reason why MyMelanoma is needed.
In the past, carrying out a study of 20K melanoma patients would have been prohibitively expensive and would have taken up too much time in the clinic. As a result of a national multidisciplinary team cancer service in the UK, and national data collection from the NHS, and benefitting from patient self registration on line, this is now possible.
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The MyMelanoma Cohort
To achieve these aims, the study will collect data directly from melanoma patients via a secure web site. These data will relate to family history, medical history and patient reported outcomes. The participants will also be asked to complete questionnaires derived from UK Biobank lifestyle questionnaires thereby allowing comparison with UKBiobank data from the 500k people who took part in UK Biobank. The bulk of the questionnaires used with however be based upon REDCap software and data stored on REDCap servers labelled with study number only Similar questionnaires will be developed for use in collaborating groups outside the UK who have similar access to national health data bases.
The study will take place in three phases:-
- Phase 1: a study of cancer risks for carriers of highly penetrant melanoma susceptibility genes. This will be a collaborative study with GenoMEL www.genomel.org
- Phase 2: recruitment to the study of any patient treated in the UK for melanoma of the skin or mucosae from which data will be collected from participants and acess to stored paraffin embedded tumour sought
- Phase 3: continued recruitment with additional blood and stool sampling subject to funding
Participants will be asked to consent to this linkage of their self reported data with those kept by health care providers (NHS in the UK). This linkage will be performed within the governmental agency empowered by law to hold cancer data (currently Public Health England) or its agent. This linkage will allow MyMelanoma to collect and analyse medical data about the participants’ health and treatment. This will commence in Phase 1 of the MyMelanoma Cohort and continue through Phases 2 and 3.
An underlying principle will be that all the data produced and any samples that might remain, properly managed, will be “an accessible resource” to bona fide researchers internationally. This endeavour will underpin international cooperation to answer questions crucial to melanoma patients as definitively and as soon as is possible.
The specific broad aims of the study have been determined in the first instance by the Protocol Writing Committee and by consultation with participants. The intent however is to collect data and samples in such a way as to inform a wider variety of investigations led by external agencies requesting information from the data centre, and others suggested by melanoma survivors.
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