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Cited by 398

The DOI matches its Crossref record; 30 of the 30 references it cites were found in a registry or an index.

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

Open access
van de Poll-Franse, Lonneke V., Horevoorts, Nicole, Eenbergen, Mies van, Denollet, Johan, Roukema, Jan Anne, Aaronson, Neil K., Vingerhoets, Ad, Coebergh, Jan Willem, de Vries, Jolanda, Essink-Bot, Marie-Louise, Mols, Floortje·2011·European Journal of Cancer
DOI 10.1016/j.ejca.2011.04.034
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Abstract

'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. PROFILES contains a large web-based component and are linked directly to clinical data from the population-based Eindhoven cancer registry. This paper describes the rationale and design of PROFILES. The primary aims of studies that use the PROFILES registry are: (1) psychosocial risk and outcome assessment to identify patients at high risk for poor physical and mental health outcomes, (2) to analyse mediating mechanisms to better understand the biological and behavioural factors associated with cancer treatment outcomes, and (3) to evaluate physical and psychosocial care needs of cancer 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. 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 ageing and comorbidities. Raw data from the PROFILES registry will be available for non-commercial scientific research, subject to study question, privacy and confidentiality restrictions, and registration (www.profilesregistry.nl).

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Metadata

Authors
van de Poll-Franse, L. V., Horevoorts, N., Eenbergen, M. V., Denollet, J., Roukema, J. A., Aaronson, N. K., Vingerhoets, A., Coebergh, J. W., de Vries, J., Essink-Bot, M.-L., & Mols, F.
Venue
European Journal of Cancer
Publisher
Elsevier BV
Published
2011-09
Volume
47
Issue
14
Pages
2188-2194
ISSN
0959-8049 (ISSN-L)
DOI
10.1016/j.ejca.2011.04.034
OpenAlex
W2171534765
Cited by
398
References
30
FWCI
7.86
Type
journal article
Language
en
Open access
bronze

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Contains information from the Semantic Scholar Academic Graph Datasets, made available under the ODC Attribution License (ODC-BY 1.0).

Semantic Scholar’s data is described in: Kinney, R., et al. (2023). The Semantic Scholar Open Data Platform. arXiv:2301.10140.