The impact of melanoma and drug treatment in the real world
Research type
Research Database
IRAS ID
296353
Contact name
Mark Larkin
Contact email
Research summary
The impact of melanoma and drug treatment in the real world
REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
21/YH/0064
Date of REC Opinion
14 Apr 2021
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Adults with any type or stage of melanoma complete validated patient-reported outcome measures at their own convenience via their smartphone, instead of only during clinic visits. Optional features designed to help participants to manage their condition and its treatment include the ability to prospectively build an exportable record of symptoms, mood and side effects, a clinician-validated knowledge section and a community feature allowing participants the option to communicate with and search for other users if they wish.
The data is available in real time and securely transferred from each smartphone to secure storage where they are anonymised and aggregated for analysis. The philanthropic business model encourages research via free dataset access to academic researchers and via fees paid by industry researchers for data access, following a successful application to the registry’s scientific advisory board. Findings from the study have been presented at national and international conferences; patient-led development through regular feedback sessions and workshops allows for a patient-centric approach and ongoing study improvements.
Research programme
Launched in 2017, the app was developed by the patient advocacy group Melanoma UK in collaboration with Vitaccess Ltd, a digital health scale-up, and The Royal Marsden NHS Foundation Trust. In recent years, immuno-oncology therapies have transformed melanoma treatment. However, despite improvements in clinical outcomes, there is a deficit in granular patient-reported outcome data. The Melanoma UK observational study explores the real-world impact of melanoma by collecting data from melanoma patients via a bespoke "bring your own device" app. Specifically, the registry objectives are to better understand the impact of melanoma and its treatment on patients, and to identify how treatment pathways are changing in light of these new immunotherapies over time.
Research database title
The impact of melanoma and drug treatment in the real world
Establishment organisation
Vitaccess Ltd
Establishment organisation address
2nd Floor Nucleus House
2 Lower Mortlake Road
Richmond, Greater London
TW9 2JA