CURRENT PROJECT 2
Construction of a data entry portal for participants in MyMelanoma: The world’s largest prospective melanoma cohort
Julia Newton-Bishop, Professor of Dermatology University of Leeds
Mark Middleton; Professor of Experimental Cancer Medicine, University of Oxford
Brian Shine, University of Oxford
Brian Nicholson, University of Oxford
Michale Youdell, University of Oxford
Rachael Brennan, Public Health England
Antonia Pritchard, University of the Highlands and Islands, Inverness
Colette Mustard, University of the Highlands and Islands
Catherine Harwood, Barts and the London Schools of Medicine and Dentistry
Zoe Venables, Norfolk and Norwich Hospital and PHE
Charlotte Proby, University of Dundee,
Rachael Abbott, Cardiff, and Vale University Health Board
Olivia Dolan, Belfast NHS Trust
Anna Olsson-Brown, University of Liverpool
Drs Sancy Leachman and Elizabeth Berry, University of Portland Oregon
Tim Bishop, University of Leeds
Saskia Reeken, Kingston NHS Hospital
Project start date
Proposed project duration
MyMelanoma is a project to build a very important data resource, to be used by melanoma researchers all over the world to answer the most important questions for melanoma patients. Any person who has been treated for melanoma of the skin or mucous membranes (genital, ear nose and throat, or the mouth) by the NHS in the UK will be eligible to join MyMelanoma by registering online when the project is launched. We hope to open recruitment in January 2023.
MyMelanoma grew out of the desire for melanoma survivors to play an active role in guiding melanoma research. The resource is therefore being developed as a close collaboration between patients, clinicians, and scientists and the MyMelanoma team will therefore be guided by the patient members of the Board and participants in the study. MyMelanoma webpage will be a crucial portal for patients to express their views.
The MyMelanoma team have defined a number of questions for melanoma patients to answer. These include whether a patient’s life after a diagnosis (exercise, diet, exposure to certain drugs) affect the chance of relapse. Other factors that the project wants to explore are how to better predict which patients have a higher risk of relapse and who might therefore consider drug treatment soon after diagnosis. In addition, to predict which patients would be unlikely to benefit from drug treatments so that they might be spared the side effects and/or try other drugs instead.
The MyMelanoma project will collect data online from very large numbers of patients which is necessary to answer these questions, and others. In order to do this an online portal must be developed which is easy for participants to use and above all, the data must be held securely. The grant provided by Melanoma Focus will allow MyMelanoma to build this portal working with a company called AIMES.
The main aims of this part of the research project
- To incorporate a secure communication system between patients and the MyMelanoma team within the REDCap system.
- To build a secure means of linking data provided by the participant with NHS data such that the linkage is accurate, and the data are held securely according to the law.
The funding from Melanoma Focus will allow:
An essential step in the development of the project by putting in place an online system for collecting information from patients. The funding will allow for the first year’s costs to be covered to support the REDCap platform and for data storage.
Comment from Project Leaders
“MyMelanoma is a very big project and the Melanoma Focus grant provided is the essential first step. It is a new concept in cancer research which we hope will escalate progress in the management of melanoma by allowing researchers anywhere in the world to use their particular expertise to examine MyMelanoma data, leading to more rapid results.”