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What sort of information will be collected and will samples eg blood samples be needed?

MyMelanoma will collect data directly from melanoma patients via a secure web site. The questions would include those about their melanoma story and treatment, their lifestyle and how the diagnosis and treatment have impacted on their life.

Participants will specifically be asked to complete questionnaires derived from UK Biobank lifestyle questionnaires thereby allowing comparison with UKBiobank data from the 500k UK residents who took part in the UK Biobank study. Scientific studies of this type give the most reliable results when they use carefully deisgned questionnaires and as as large as possible, which is why we have chosen to use the Biobank questionnaires.  MyMelanoma will also use a questionnaire developed by Drs Sancy Leachman and Liz Berry from the University of Portland, Oregan for their work there called War on Melanoma for the same reason. 

Participants will also be asked to consent to linkage of the information they have entered into the system with information kept by health care providers (NHS in the UK). This linkage will be performed within Public Health England in the UK and will allow MyMelanoma to use medical and test data about the participants’ health and treatment without the assistance of overly busy medical teams in hospital. This will commence in Phase 1 of the MyMelanoma Cohort and continue through Phases 2 and 3.

Participants will also be asked to donate samples (from blood, stool and tumour tissue) using which, scientific experiments will be performed. This will commence in Phase 3, subject to funding. 

An underlying principle will be that all the data produced and any samples that might remain, properly managed, will be “an accessible resource” for 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 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 so we use the information to the greatest possible effect.

What sort of information will be collected and will samples eg blood samples be needed?

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