The Profiles* Registry: Scope, Rationale and Design of an Infrastructure for the Study of Physical and Psychosocial Outcomes in Cancer Survivorship Cohorts



Maria C.h.j. Van Eenbergen* Maria C.h.j. Van Eenbergen*, CoRPS Tilburg, Comprehensive Cancer Centre South (CCCS), Eindhoven, The Netherlands, Eindhoven, Netherlands
Lonneke V. Van De Poll-franse, CoRPS Tilburg, Comprehensive Cancer Centre South (CCCS), Eindhoven, The Netherlands, Tilburg, Netherlands
Floortje Mols, CoRPS Tilburg, Comprehensive Cancer Centre South (CCCS), Eindhoven, The Netherlands, Tilburg, Netherlands


Track: Research
Presentation Topic: Web 2.0 approaches for clinical practice, clinical research, quality monitoring
Presentation Type: Poster presentation
Submission Type: Single Presentation

Building: LKSC Conference Center Stanford
Room: Lower Lobby
Date: 2011-09-18 12:00 PM – 01:00 PM
Last modified: 2011-08-12
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Abstract


*PROFILES: Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship

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 is 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 behavioral factors associated with cancer treatment outcomes, and (3) to evaluate physical and psychosocial care needs of cancer survivors.
PROFILES is a tool that enables efficient data collection in longitidunal panel studies, it can improve the quality and completeness of data collection. It enables data 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 aging and comorbidities.

Currently, PROFILES is a regional project linked to the ECR covering 2.4 million inhabitants in the Netherlands. In the nearby future, we foresee to expand the data collection by use of the PROFILES system to other cancer registries in the Netherlands or abroad. This will be important for the study of survivors of relatively rare tumors for which wider coverage is necessary in order to achieve sufficient statistical power.

Patient data and privacy are protected on different ways; data encryption, seperate storage of data, informed consent, collaboration of researchers and treating medical specialist.
From may 2011 and onwards, raw data from both old and new PROFILES studies will be made available regularly for non-commercial scientific research, subject to study question, privacy, and confidentiality restrictions, and registration (www.profilesstudy.nl).




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