Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES)
PROFILES is a web-based registry for the collection of data on the physical and psychosocial impact of cancer and its treatment. The registry includes a population-based cohort of around 40,000 cancer survivors across the Netherlands, recruited from cancer registries and subsequent mail invitations. The PROFILES Registry is linked to the Netherlands Cancer Registry, allowing merging of patient-reported outcomes and clinical data. Additionally, a control cohort of approximately 2,000 adult individuals from the general Dutch population is included within PROFILES for comparison with cancer survivors.
Study design
Registry
Number of participants at first data collection
~2,000 (control participants)
~40,000 (cancer survivors)
Recruitment is ongoing
Age at first data collection
≥ 18 years (control participants)
Varied (cancer survivors)
Participant year of birth
Varied (control participants)
Varied (cancer survivors)
Participant sex
All
Representative sample at baseline?
No
Sample features
Country
Year of first data collection
2004
Primary Institutions
Netherlands Comprehensive Cancer Organisation (Integraal Kankercentrum Nederland, IKNL)
Tilburg University (Tilburg Universiteit, TiU)
Profile paper DOI
Not available
Funders
Comprehensive Cancer Centre South (Integraal Kankercentrum Zuid, IKZ)
Dutch Research Council (Nederlandse Organisatie voor Wetenschappelijk Onderzoek, NWO)
Tilburg University (Tilburg Universiteit, TiU)
Ongoing?
Yes
Data types collected
- Activity log (e.g. food, sleep, exercise)
- Physical or biological assessment (e.g. blood, saliva, gait, grip strength, anthropometry)
- Secondary data
- Self-report questionnaire – online
- Self-report questionnaire – paper or computer assisted
- Wearable devices
- None
- None
- Healthcare data
- Mortality data
Engagement
Keywords
