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Melanoma UK Digital Patient Registry

Launching soon – please click here to register your interest in participating!

Introducing the Melanoma UK digital platform

Melanoma UK has been working with healthcare company Vitaccess to develop a digital platform to collect data from people living with melanoma. Data are collected in the real-world setting using “bring your own device” (BYOD) technology – participants use their own smartphone or tablet to complete questionnaires or surveys at their convenience. Data are immediately submitted to a central data platform; users of the platform can see and analyse the aggregated data in real time.

What data are being collected?

The platform will collect rich demographic and epidemiology data across all stages of disease, treatment, and beyond.

Initially, the platform with collect data on quality of life in people living with and being treated for melanoma in the real-world setting. To date, such data have been collected only in the somewhat “artificial” setting of clinical trials. This study will help us to understand how people feel during what has become routine treatment, and afterwards. The pilot stage will collect data in the UK but we plan to extend data collection globally.

Why digital data collection?

The advantages of electronic data collection are well documented and include reduced administrative burden for participants and administrators, the avoidance of errors in data collection and entry, and fewer items of missing data. Participants at a recent Melanoma UK patient consultation event were overwhelmingly in favour of electronic data collection because paperwork cannot be lost and they can complete questionnaires when they want to.

Screenshots from the Melanoma UK app

 

 

 

 

How do patients benefit?

Participants benefit from monitoring and recording how they feel, and the platform provides a convenient way for them to share their data with friends, family and healthcare professionals. Development of this platform has been collaborative: at the recent UK Melanoma Patient Conference, we canvassed future participants on the functionalities that they would have used. Based on this extremely positive feedback, features such as a daily pain diary, knowledge centre, consultation checklists and events timeline have been built into the platform, as shown in the screenshots above.

Who can access the data?

The data will be available free of charge to academic researchers, and through a subscription service to industry. The powerful online portal gives access to dashboards combining graphical representation of the data with appropriate statistical analysis, allowing data to be used readily in models and publications.

For more information and to sign up:

To register your interest in participation, please click here or contact us:

Melanoma UK: www.melanomauk.org.uk

Gill Nuttall Gillian.Nuttall@melanomauk.org.uk

Di Cannon Diane.Cannon@melanomauk.org.uk

Vitaccess: www.vitaccess.com

Dr Mark Larkin mark.larkin@vitaccess.com

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