Patient registry app to record real world evidence from people with melanoma.
“Melanoma UK has been working with healthcare company Vitaccess to develop a digital platform to collect data from people living with melanoma….
…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.
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.
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.
Data will be available free of charge to academic researchers, and through a subscription service to industry.”Patient group which developed the app, Melonoma UK | http://bit.ly/2Fceu8s
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