The PhenX Toolkit: standard measurement resources for cancer outcomes and survivorship research

Author:

Nekhlyudov Larissa1ORCID,Bellizzi Keith2ORCID,Galligan Andrew3,King-Kallimanis Bellinda4ORCID,Mayer Deborah K5,Miaskowski Christine6,Salz Talya7,McCarty Catherine8,Cox Lisa9,Hill Christine9,Hendershot Tabitha P9,Maiese Deborah R9,Hamilton Carol M9

Affiliation:

1. Department of Medicine, Brigham and Women’s Hospital , Boston, MA, USA

2. Human Development and Family Sciences, University of Connecticut , Storrs, CT, USA

3. Department of Pediatrics, University of South Florida (USF Health) , Tampa, FL, USA

4. LUNGevity Foundation , Bethesda, MD, USA

5. Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill , Chapel Hill, NC, USA

6. School of Nursing, University of California , San Francisco, CA, USA

7. Department of Epidemiology and Biostatistics, Memorial Sloan Kettering Cancer Center , New York, NY, USA

8. Department of Family Medicine and Biobehavioral Health, University of Minnesota Medical School , Duluth, MN, USA

9. RTI International , Research Triangle Park, NC, USA

Abstract

AbstractThis brief report introduces the Cancer Outcomes and Survivorship domain in the PhenX Toolkit (consensus measures for Phenotypes and eXposures), which includes 15 validated measurement protocols for cancer survivorship research that were recommended for inclusion in this publicly available resource. Developed with input from the scientific community, the domain provides researchers with well-established measurement protocols for evaluating physical and psychological effects, financial toxicity, and patient experiences with cancer care. The PhenX Toolkit, funded by the National Human Genome Research Institute since 2007, is an online resource that provides high-quality standard measurement protocols for a wide range of research areas (eg, smoking cessation, harm reduction and biomarkers, and social determinants of health). Use of the PhenX Cancer Survivorship Outcomes and Survivorship domain can simplify the selection of measurement protocols, data sharing, and comparisons across studies investigating the cancer survivorship experience.

Funder

National Human Genome Research Institute

National Institutes of Health

National Institute on Drug Abuse

National Heart, Lung, and Blood Institute

Office of Behavioral and Social Sciences Research

National Institute on Minority Health and Health Disparities

Tobacco Regulatory Science Program

Publisher

Oxford University Press (OUP)

Subject

Cancer Research,Oncology

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