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AuteursM.A.G. Sprangers, J.A. Sloan, R. Veenhoven, C.S. Cleeland, M.Y. Halyard, A.P. Abertnethy, F. Baas, A.M. Barsevick, M. Bartels, D.I. Boomsma, C. Chauhan, A.C. Dueck, M.H. Frost, P. Hall, P. Klepstad, N.G. Martin, C. Miaskowski, M. Mosing, B. Movsas, C.J.F. van Noorden, D.L. Patrick, N.L. Pedersen, M.E. Ropka, Q. Shi, G. Shinozaki, J.A. Singh, P. Yang, A.H. Zwinderman
TitelThe establishment of the GENEQOL consortium to investigate the genetic disposition of patient-reported quality-of-life outcomes
TijdschriftTwin research and human genetics
Jaargang12
Jaar2009
Nummer3
Pagina's301-311
ISSN18324274
FaculteitFaculteit der Maatschappij- en Gedragswetenschappen
AMC-UvA
Instituut/afd.FMG: Amsterdam Institute for Social Science Research (AISSR)
SamenvattingTo our knowledge, no comprehensive, interdisciplinary initiatives have been taken to examine the role of genetic variants on patient-reported qualityof-life outcomes. The overall objective of this paper is to describe the establishment of an international and interdisciplinary consortium, the GENEQOL Consortium, which intends to investigate the genetic disposition of patient-reported quality-of-life outcomes. We have identified five primary patient-reported quality-of-life outcomes as initial targets: negative psychological affect, positive psychological affect, self-rated physical health, pain, and fatigue. The first tangible objective of the GENEQOL Consortium is to develop a list of potential biological pathways, genes and genetic variants involved in these quality-of-life outcomes, by reviewing current genetic knowledge. The second objective is to design a research agenda to investigate and validate those genes and genetic variants of patient-reported quality-of-life outcomes, by creating large datasets. During its first meeting, the Consortium has discussed draft summary documents addressing these questions for each patient-reported quality-of-life outcome. A summary of the primary pathways and robust findings of the genetic variants involved is presented here. The research agenda outlines possible research objectives and approaches to examine these and new quality-of-life domains. Intriguing questions arising from this endeavor are discussed. Insight into the genetic versus environmental components of patient-reported quality-of-life outcomes will ultimately allow us to explore new pathways for improving patient care. If we can identify patients who are susceptible to poor quality of life, we will be able to better target specific clinical interventions to enhance their quality of life and treatment outcomes.
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