Lessons learned about harmonizing survey measures for the CSER consortium

Katrina A.B. Goddard*, Frank A.N. Angelo, Sara L. Ackerman, Jonathan S. Berg, Barbara B. Biesecker, Maria I. Danila, Kelly M. East, Lucia A. Hindorff, Carol R. Horowitz, Jessica Ezzell Hunter, Galen Joseph, Sara J. Knight, Amy McGuire, Kristin R. Muessig, Jeffrey Ou, Simon Outram, Elizabeth J. Rahn, Michelle A. Ramos, Christine Rini, Jill O. RobinsonHadley Stevens Smith, Margaret Waltz, Sandra Soo Jin Lee

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

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.

Original languageEnglish (US)
Pages (from-to)537-546
Number of pages10
JournalJournal of Clinical and Translational Science
Volume4
Issue number6
DOIs
StatePublished - 2020

Keywords

  • collaboration
  • exome
  • genome
  • multidisciplinary
  • Team science

ASJC Scopus subject areas

  • Medicine(all)

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