Journal article
The Establishment of the GENEQOL Consortium to Investigate the Genetic Disposition of Patient-Reported Quality-of-Life Outcomes
Twin research and human genetics, Vol.12(3), pp.301-311
06/01/2009
DOI: 10.1375/twin.12.3.301
PMCID: PMC2824176
PMID: 19456223
Abstract
To our knowledge, no comprehensive, interdisciplinary initiatives have been taken to examine the role of genetic variants on patient-reported quality-of-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.
Details
- Title: Subtitle
- The Establishment of the GENEQOL Consortium to Investigate the Genetic Disposition of Patient-Reported Quality-of-Life Outcomes
- Creators
- Quiling Shi - 24Department of Symptom Research, The University of Texas M. D. Anderson Cancer Center, Houston, TX, United States of AmericaGen Shinozaki - 25Department of Psychiatry and Psychology, Mayo Clinic, Rochester, MN, United States of AmericaMirjam A. G Sprangers - 1Department of Medical Psychology, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands. m.a.sprangers@amc.uva.nlJeff A Sloan - 2Department of Health Sciences Research, Mayo Clinic, Rochester, MN, United States of AmericaRuut Veenhoven - 3Faculty of Social Sciences, Erasmus University Rotter dam, Rotterdam, The NetherlandsCharles S Cleeland - 4Department of Symptom Research, The University of Texas M. D. Anderson Cancer Center, Houston, TX, United States of AmericaMichele Y Halyard - 5Department of Radiation Oncology, Mayo Clinic, Scottsdale, AZ, United States of AmericaAmy P Abertnethy - 6Duke Cancer Care Research Program, Duke University Medical Center, Durham, NC, United States of AmericaFrank Baas - 7Laboratory of Neurogenetics, Academic Medical Center, University of Amsterdam, Amsterdam, The NetherlandsAndrea M Barsevick - 8Nursing Research and Education, Fox Chase Cancer Center, Philadelphia, PA, United States of AmericaMeike Bartels - 9Department of Biological Psychology, VU University, Amsterdam, the NetherlandsDorret I Boomsma - 10Department of Biological Psychology, VU University, Amsterdam, the NetherlandsCynthia Chauhan - 11Cancer Advocay, Wichita, KS, United States of AmericaAmylou C Dueck - 12Section of Biostatistics, Mayo Clinic, Scottsdale, AZ, United States of AmericaMarlene H Frost - 13Women's Cancer Program, Mayo Clinic, Rochester, MN, United States of AmericaPer Hall - 14Department of Medical Epidemiology and Biostatistics, Karolinska Institute, Stockholm, SwedenPål Klepstad - 15Department of Intensive Care Medicine, St Olavs University Hospital, Norwegian University of Technology and Science, Trondheim, NorwayNicholas G Martin - 16Queensland Institute of Medical Research, Brisbane, AustraliaChristine Miaskowski - 17School of Nursing, University of California, San Francisco, CA, United States of AmericaMiriam Mosing - 18Queensland Institute of Medical Research, Brisbane, AustraliaBenjamin Movsas - 19Department of Radiation Oncology, Henry Ford Health System, Detroit, MI, United States of AmericaCornelis J. F Van Noorden - 20Department of Cell Biology and Histology, Academic Medical Center, University of Amsterdam, Amsterdam, The NetherlandsDonald L Patrick - 21Department of Health Services, University of Washington, Seattle, WA, United States of AmericaNancy L Pedersen - 22Department of Medical Epidemiology and Biostatistics, Karolinska Institute, Stockholm, SwedenMary E Ropka - 23Cancer Prevention and Control Program, Fox Chase Cancer Center, Cheltenham, PA, United States of AmericaJasvinder A Singh - 26Minneapolis Veterans Affairs Medical Center and University of Minnesota, Minneapolis, MN and Mayo Clinic College of Medicine, Rochester, MN, United States of AmericaPing Yang - 27Department of Genetic Epidemiology, Mayo Clinic, Rochester, MN, United States of AmericaAilko H Zwinderman - 28Department of Clinical Epidemiology and Biostatistics, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
- Resource Type
- Journal article
- Publication Details
- Twin research and human genetics, Vol.12(3), pp.301-311
- Publisher
- Cambridge University Press; Cambridge, UK
- DOI
- 10.1375/twin.12.3.301
- PMID
- 19456223
- PMCID
- PMC2824176
- ISSN
- 1832-4274
- eISSN
- 1839-2628
- Number of pages
- 11
- Language
- English
- Date published
- 06/01/2009
- Academic Unit
- Psychiatry; Iowa Neuroscience Institute; Anesthesia; Neurosurgery
- Record Identifier
- 9984070742602771
Metrics
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