TY - JOUR
T1 - The establishment of the GENEQOL consortium to investigate the genetic disposition of patient-reported quality-of-life outcomes
AU - Sprangers, Mirjam A.G.
AU - Sloan, Jeff A.
AU - Veenhoven, Ruut
AU - Cleeland, Charles S.
AU - Halyard, Michele Y.
AU - Abertnethy, Amy P.
AU - Baas, Frank
AU - Barsevick, Andrea M.
AU - Bartels, Meike
AU - Boomsma, Dorret I.
AU - Chauhan, Cynthia
AU - Dueck, Amylou C.
AU - Frost, Marlene H.
AU - Hall, Per
AU - Klepstad, Pål
AU - Martin, Nicholas G.
AU - Miaskowski, Christine
AU - Mosing, Miriam
AU - Movsas, Benjamin
AU - Van Noorden, Cornelis J.F.
AU - Patrick, Donald L.
AU - Pedersen, Nancy L.
AU - Ropka, Mary E.
AU - Shi, Quiling
AU - Shinozaki, Gen
AU - Singh, Jasvinder A.
AU - Yang, Ping
AU - Zwinderman, Ailko H.
N1 - Funding Information:
This work was, in part, supported by National Institutes of Health CTSA Award 1 KL2 RR024151-01 given to J. A. Sing at the Mayo Clinic Center for Clinical and Translational Research.
PY - 2009/6
Y1 - 2009/6
N2 - 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.
AB - 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.
KW - Fatigue
KW - Genetic disposition
KW - Pain
KW - Quality of life
KW - Self-rated health
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U2 - 10.1375/twin.12.3.301
DO - 10.1375/twin.12.3.301
M3 - Review article
C2 - 19456223
AN - SCOPUS:67249137495
SN - 1832-4274
VL - 12
SP - 301
EP - 311
JO - Twin Research and Human Genetics
JF - Twin Research and Human Genetics
IS - 3
ER -