"Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES)" is a registry for the study of the physical and psychosocial impact of cancer and its treatment from a dynamic, growing population-based cohort of both short and long-term cancer survivors.
The PROFILES registry
Researchers from the Netherlands Comprehensive Cancer Organisation (IKNL) and Tilburg University in Tilburg, The Netherlands, work together with medical specialists from national hospitals in order to setup different PROFILES studies, collect the necessary data, and present the results in scientific journals and (inter)national conferences.
Scope, rationale and design of PROFILES were published in the European Journal of Cancer, May 2011: The Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship registry: Scope, rationale and design of an infrastructure for the study of physical and psychosocial outcomes in cancer survivorship cohorts.
PROFILES was built to increase the knowledge on the impact of cancer on people’s lives across the whole cancer continuum. The primary goal of studies that use the PROFILES registry are:
- psychosocial risk and outcome assessment to identify patients at high risk for poor physical and mental health outcomes,
- to analyse mediating mechanisms to better understand the biological and behavioral factors associated with cancer treatment outcomes, and
- to evaluate physical and psychosocial care needs of cancer survivors.
Results of PROFILES studies will contribute to better care and aftercare for both patients and survivors.
PROFILES is a tool that enables data collection management; from inviting patients to participation in studies, to collecting patient-reported outcomes data via web-based or mailed questionnaires, and linking these data with clinical data. PROFILES contains a large web-based component and is linked directly to clinical data from the population-based Netherlands cancer registry.
The availability of a control cohort of approximately 2000 persons from the general population who complete the same basic questionnaire annually will provide the opportunity to estimate the unique impact of cancer, beyond that of normal aging and comorbidities.
Raw data from the PROFILES registry is available for non-commercial scientific research, subject to study question, privacy, and confidentiality restrictions, and registration.