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| Name | Class |
|---|---|
| Melanoma UK | UNKNOWN |
| Royal Marsden NHS Foundation Trust | OTHER |
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An observational, non-interventional registry study to collect real-world data from people living with melanoma and its treatment, which will be available to researchers to further the knowledge of melanoma and improve patient care.
The registry uses Vitaccess' digital real-world evidence platform, and has been developed in collaboration with the patient advocacy group Melanoma UK.
Eligible participants install a study app on their smartphone or tablet. Researchers access aggregated, anonymised data via a cloud-based research portal. The platform provides benefits to participants, which it is hoped will encourage persistence with data submission; these include options to upload electronic documents such as scans, and access an online melanoma community.
The aggregated data are available in close to real time via "dashboards" and can be analysed according to a number of pre-set criteria (e.g. disease stage, age, geographic location).
State-of-the-art technologies and security policies are used in the platform to ensure industry-standard data storage and privacy for all users. Participants' personally identifiable information will remain confidential at all times, and researchers will not be able to identify individuals.
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| Measure | Description | Time Frame |
|---|---|---|
| Health-Related Quality of Life (HRQL), general | EQ-5D-5L | Monthly throughout 4 year study duration |
| Measure | Description | Time Frame |
|---|---|---|
| Health-Related Quality of Life (HRQL), oncology | QLQ-C30 | Monthly throughout 4 year study duration |
| Health-Related Quality of Life (HRQL), symptoms | PRO-CTCAE |
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Inclusion Criteria:
Exclusion Criteria:
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Adults (age ≥18 years) with melanoma of any stage, who are resident in the UK, with NHS or CHI number, current or previous diagnosis of melanoma, willing to use their own smartphone or tablet.
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| Name | Affiliation | Role |
|---|---|---|
| Mark JW Larkin, PhD | Vitaccess Ltd | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Vitaccess Ltd | Oxford | OX1 1BY | United Kingdom |
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| Label | URL |
|---|---|
| Digital platform used to support the study | View source |
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Aggregated data research dashboards will be available via industry subscriptions or free academic access.
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| ID | Term |
|---|---|
| D008545 | Melanoma |
| ID | Term |
|---|---|
| D018358 | Neuroendocrine Tumors |
| D017599 | Neuroectodermal Tumors |
| D009373 | Neoplasms, Germ Cell and Embryonal |
| D009370 | Neoplasms by Histologic Type |
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| Monthly throughout 4 year study duration |
| D009369 | Neoplasms |
| D009380 | Neoplasms, Nerve Tissue |
| D018326 | Nevi and Melanomas |
| D012878 | Skin Neoplasms |
| D009371 | Neoplasms by Site |
| D012871 | Skin Diseases |
| D017437 | Skin and Connective Tissue Diseases |