Table 2.
Summary of registries using PROM and/or PREM data, including people with melanoma
| Registry name | Country | PROMs/ PREMs collected |
Collection method | Collection time points | Inclusion criteria | Method of participant identification | Languages offered | Funding | Data availability |
| Dutch Melanoma Treatment Registry |
The Netherlands |
EQ-5D, FACT-G, FACT-M |
Online, facilitated by clinic | Every 3 months | Patients with stage IIIc–IV melanoma | Patients referred to participating melanoma centres | Dutch | Combination of pharmaceutical companies, health insurance companies and melanoma centres | Annual report, data available to contributors by application |
| Adelphi Real-World Disease-Specific Programme (Melanoma) |
UK, USA, France, Germany, Italy, Spain |
EQ-5D, FACT-G, FACT-M |
‘Patient self-completing records’ completed following consultation | Once, during defined survey periods | Patients with stage IIIb–IV melanoma | Sample of patients taken from participating physicians | English, French, German, Italian, Spanish |
Private company | Subscription basis |
| PROFILES | The Netherlands |
EORTC QLQ-C30, FAS, HADS, EORTC QLQ-INFO26 |
Online or paper-based | 1–4 times/year | Cancer survivors, following primary treatment | Recruited from the Eindhoven Cancer Registry | Dutch | Comprehensive Cancer Centre South, Centre of Research on Psychology in Somatic Diseases, The Netherlands Organisation for Scientific Research |
Available for non-commercial research |
| Cancer Experience Registry |
International | PROMIS-29 | Online | Once, at registration | Individuals with a diagnosis of cancer, or carers of patients with cancer | Self-elected participation through online website | English | Cancer Support Community | Annual report, publications from the Cancer Support Community |
EQ-5D, EuroQol-5 Dimensions; FACT-G, Functional Assessment of Cancer Therapy-General; FACT-M, Functional Assessment of Cancer Therapy-Melanoma; FAS, Fatigue Assessment Scale; HADS, Hospital Anxiety and Depression Scale; PREMs, patient-reported experience measures; PROFILES, Patient-Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship; PROMIS-29, Patient-Reported Outcome Measures Information System-29; PROMs, patient-reported outcome measures; EORTC QLQ-C30, European Organisation for Research and Treatment of Cancer Core Quality of Life Questionnaire 30; EORTC QLQ-INFO26, European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Information Module 26.