Lessons learned about harmonizing survey measures for the CSER consortium

Katrina A B Goddard¹, Frank A N Angelo², Sara L Ackerman³, Jonathan S Berg⁴, Barbara B Biesecker⁵, Maria I Danila⁶, Kelly M East⁷, Lucia A Hindorff⁸, Carol R Horowitz^{9

10}, Jessica Ezzell Hunter¹, Galen Joseph¹¹, Sara J Knight¹², Amy McGuire¹³, Kristin R Muessig¹, Jeffrey Ou², Simon Outram¹⁴, Elizabeth J Rahn⁶, Michelle A Ramos¹⁰, Christine Rini^{15

16}, Jill O Robinson¹³, Hadley Stevens Smith¹³, Margaret Waltz¹⁷, Sandra Soo-Jin Lee¹⁸

Affiliations

¹ Center for Health Research, Kaiser Permanente Northwest, Portland, OR, USA.
² Department of Medicine, Division of Medical Genetics, University of Washington, Seattle, WA, USA.
³ Department of Social and Behavioral Sciences, University of California, San Francisco, USA.
⁴ Department of Genetics, University of North Carolina, Chapel Hill, USA.
⁵ RTI International, Washington, DC, USA.
⁶ Department of Medicine, University of Alabama at Birmingham, Birmingham, AL, USA.
⁷ HudsonAlpha Institute for Biotechnology, Huntsville, AL, USA.
⁸ Division of Genomic Medicine, NHGRI, NIH, Bethesda, MD, USA.
⁹ Department of Medicine, General Internal Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
¹⁰ Department of Population Health Science and Policy, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
¹¹ Department of Anthropology, History, and Social Medicine, University of California, San Francisco, USA.
¹² Division of Epidemiology, Department of Internal Medicine, University of Utah, Salt Lake City, UT, USA.
¹³ Center for Medical Ethics and Health Policy at Baylor College of Medicine, Houston, TX, USA.
¹⁴ Program in Bioethics, University of California, San Francisco, USA.
¹⁵ Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
¹⁶ Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL, USA.
¹⁷ Department of Social Medicine, University of North Carolina, Chapel Hill, USA.
¹⁸ Division of Ethics, Department of Medical Humanities and Ethics, Columbia University, New York, NY, USA.

PMID: 33948230
PMCID: PMC8057449
DOI: 10.1017/cts.2020.41

Lessons learned about harmonizing survey measures for the CSER consortium

Katrina A B Goddard et al. J Clin Transl Sci. 2020.

. 2020 Apr 24;4(6):537-546.

doi: 10.1017/cts.2020.41.

Authors

Affiliations

¹ Center for Health Research, Kaiser Permanente Northwest, Portland, OR, USA.
² Department of Medicine, Division of Medical Genetics, University of Washington, Seattle, WA, USA.
³ Department of Social and Behavioral Sciences, University of California, San Francisco, USA.
⁴ Department of Genetics, University of North Carolina, Chapel Hill, USA.
⁵ RTI International, Washington, DC, USA.
⁶ Department of Medicine, University of Alabama at Birmingham, Birmingham, AL, USA.
⁷ HudsonAlpha Institute for Biotechnology, Huntsville, AL, USA.
⁸ Division of Genomic Medicine, NHGRI, NIH, Bethesda, MD, USA.
⁹ Department of Medicine, General Internal Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
¹⁰ Department of Population Health Science and Policy, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
¹¹ Department of Anthropology, History, and Social Medicine, University of California, San Francisco, USA.
¹² Division of Epidemiology, Department of Internal Medicine, University of Utah, Salt Lake City, UT, USA.
¹³ Center for Medical Ethics and Health Policy at Baylor College of Medicine, Houston, TX, USA.
¹⁴ Program in Bioethics, University of California, San Francisco, USA.
¹⁵ Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
¹⁶ Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL, USA.
¹⁷ Department of Social Medicine, University of North Carolina, Chapel Hill, USA.
¹⁸ Division of Ethics, Department of Medical Humanities and Ethics, Columbia University, New York, NY, USA.

PMID: 33948230
PMCID: PMC8057449
DOI: 10.1017/cts.2020.41

Abstract

Introduction: Implementation of genome-scale sequencing in clinical care has significant challenges: the technology is highly dimensional with many kinds of potential results, results interpretation and delivery require expertise and coordination across multiple medical specialties, clinical utility may be uncertain, and there may be broader familial or societal implications beyond the individual participant. Transdisciplinary consortia and collaborative team science are well poised to address these challenges. However, understanding the complex web of organizational, institutional, physical, environmental, technologic, and other political and societal factors that influence the effectiveness of consortia is understudied. We describe our experience working in the Clinical Sequencing Evidence-Generating Research (CSER) consortium, a multi-institutional translational genomics consortium.

Methods: A key aspect of the CSER consortium was the juxtaposition of site-specific measures with the need to identify consensus measures related to clinical utility and to create a core set of harmonized measures. During this harmonization process, we sought to minimize participant burden, accommodate project-specific choices, and use validated measures that allow data sharing.

Results: Identifying platforms to ensure swift communication between teams and management of materials and data were essential to our harmonization efforts. Funding agencies can help consortia by clarifying key study design elements across projects during the proposal preparation phase and by providing a framework for data sharing data across participating projects.

Conclusions: In summary, time and resources must be devoted to developing and implementing collaborative practices as preparatory work at the beginning of project timelines to improve the effectiveness of research consortia.

Keywords: Team science; collaboration; exome; genome; multidisciplinary.

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Conflict of interest statement

The authors have nothing to disclose.

Figures

**Fig. 1.**
Structure of Clinical Sequencing Evidence-Generating Research (CSER) consortium. The CSER consortium includes six extramural projects (blue text), one intramural project (ClinSeq A2), and a coordinating center. Each project includes between one and seven implementation sites (bulleted lists).

See this image and copyright information in PMC

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Lessons learned about harmonizing survey measures for the CSER consortium

Affiliations

Lessons learned about harmonizing survey measures for the CSER consortium

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

Grants and funding

LinkOut - more resources

Full Text Sources