The National Cancer Database is a clinical oncology database built from hospital registry data at Commission on Cancer-accredited facilities.
Profiles Registry
The PROFILES registry studies the physical and psychosocial effects of cancer and treatment among cancer survivors.
About Profiles Registry
PROFILES (Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship) is a registry that studies the physical and psychosocial impact of cancer and its treatment in short- and long-term survivors. It is operated by researchers from the Netherlands Comprehensive Cancer Organisation and Tilburg University, with medical specialists from hospitals in the Netherlands.
It manages study invitations and collects patient-reported outcomes through web-based or mailed questionnaires, linked to clinical data from the population-based Netherlands Cancer Registry. It includes an annual control cohort of about 2000 people from the general population. Raw data is available for non-commercial scientific research, subject to review of the study question, privacy and confidentiality restrictions, and registration.
Key features
- Collects patient-reported outcomes via web-based or mailed questionnaires
- Links questionnaire data with Netherlands Cancer Registry clinical data
- Manages patient invitations to participate in studies
- Includes annual control cohort of about 2000 general-population respondents
- Supports psychosocial risk and outcome assessment in cancer survivors
- Evaluates physical and psychosocial care needs of survivors
Best for: Researchers doing non-commercial scientific work on physical and psychosocial outcomes in cancer survivorship.
Good for
- Links self-reported outcomes with clinical data from the Netherlands Cancer Registry
- Includes a general-population control group completing the same basic questionnaire annually
- Covers both short- and long-term survivors in a growing population-based cohort
Watch out for
- Raw data access is limited to non-commercial scientific research
- Access requires registration and is subject to privacy and confidentiality restrictions
- Access is subject to review of the study question
Profiles Registry at a glance
- Website
- profilesregistry.nl
- Category
- Research & Data › Health & Medical Data
- Type
- Website
- Pricing
- Not confirmed. Check the site
- Platforms
- Web
- Open source
- Not stated
- Language
- English
- Last checked
- Oct 5, 2026 · Online when checked
- Listed
- Oct 5, 2026
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Profiles Registry FAQ
How does PROFILES collect data?
It invites patients to studies and collects patient-reported outcomes via web-based or mailed questionnaires, then links those responses with clinical data from the Netherlands Cancer Registry.
Who runs PROFILES studies?
Researchers from the Netherlands Comprehensive Cancer Organisation and Tilburg University work with medical specialists from national hospitals to set up studies, collect data, and present results.
Who can use raw data from the registry?
Raw data is available for non-commercial scientific research, subject to study question, privacy, and confidentiality restrictions, and registration.
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