New models for large prospective studies

Is there a risk of throwing out the baby with the bathwater?

Michael B. Bracken, Dean Baker, Jane A. Cauley, Christina Chambers, Jennifer Culhane, Dana Dabelea, Dorr Dearborn, Carolyn D. Drews-Botsch, Donald J. Dudley, Maureen Durkin, Barbara Entwisle, Louise Flick, Daniel Hale, Jane Holl, Melbourne Hovell, Mark Hudak, Nigel Paneth, Bonny Specker, Mari S Wilhelm, Sharon Wyatt

Research output: Contribution to journalArticle

8 Citations (Scopus)

Abstract

Manolio et al. (Am J Epidemiol. 2012;175:859-866) proposed that large cohort studies adopt novel models using "temporary assessment centers" to enroll up to a million participants to answer research questions about rare diseases and "harmonize" clinical endpoints collected from administrative records. Extreme selection bias, we are told, will not harm internal validity, and "process expertise to maximize efficiency of high-throughput operations is as important as scientific rigor" (p. 861). In this article, we describe serious deficiencies in this model as applied to the United States. Key points include: 1) the need for more, not less, specification of disease endpoints; 2) the limited utility of data collected from existing administrative and clinical databases; and 3) the value of university-based centers in providing scientific expertise and achieving high recruitment and retention rates through community and healthcare provider engagement. Careful definition of sampling frames and high response rates are crucial to avoid bias and ensure inclusion of important subpopulations, especially the medically underserved. Prospective hypotheses are essential to refine study design, determine sample size, develop pertinent data collection protocols, and achieve alliances with participants and communities. It is premature to reject the strengths of large national cohort studies in favor of a new model for which evidence of efficiency is insufficient.

Original languageEnglish (US)
Pages (from-to)285-289
Number of pages5
JournalAmerican Journal of Epidemiology
Volume177
Issue number4
DOIs
StatePublished - 2013
Externally publishedYes

Fingerprint

Cohort Studies
Prospective Studies
Community Health Services
Selection Bias
Rare Diseases
Health Personnel
Sample Size
Databases
Research

Keywords

  • cohort studies
  • epidemiology
  • prospective studies
  • research design

ASJC Scopus subject areas

  • Epidemiology

Cite this

Bracken, M. B., Baker, D., Cauley, J. A., Chambers, C., Culhane, J., Dabelea, D., ... Wyatt, S. (2013). New models for large prospective studies: Is there a risk of throwing out the baby with the bathwater? American Journal of Epidemiology, 177(4), 285-289. https://doi.org/10.1093/aje/kws408

New models for large prospective studies : Is there a risk of throwing out the baby with the bathwater? / Bracken, Michael B.; Baker, Dean; Cauley, Jane A.; Chambers, Christina; Culhane, Jennifer; Dabelea, Dana; Dearborn, Dorr; Drews-Botsch, Carolyn D.; Dudley, Donald J.; Durkin, Maureen; Entwisle, Barbara; Flick, Louise; Hale, Daniel; Holl, Jane; Hovell, Melbourne; Hudak, Mark; Paneth, Nigel; Specker, Bonny; Wilhelm, Mari S; Wyatt, Sharon.

In: American Journal of Epidemiology, Vol. 177, No. 4, 2013, p. 285-289.

Research output: Contribution to journalArticle

Bracken, MB, Baker, D, Cauley, JA, Chambers, C, Culhane, J, Dabelea, D, Dearborn, D, Drews-Botsch, CD, Dudley, DJ, Durkin, M, Entwisle, B, Flick, L, Hale, D, Holl, J, Hovell, M, Hudak, M, Paneth, N, Specker, B, Wilhelm, MS & Wyatt, S 2013, 'New models for large prospective studies: Is there a risk of throwing out the baby with the bathwater?', American Journal of Epidemiology, vol. 177, no. 4, pp. 285-289. https://doi.org/10.1093/aje/kws408
Bracken, Michael B. ; Baker, Dean ; Cauley, Jane A. ; Chambers, Christina ; Culhane, Jennifer ; Dabelea, Dana ; Dearborn, Dorr ; Drews-Botsch, Carolyn D. ; Dudley, Donald J. ; Durkin, Maureen ; Entwisle, Barbara ; Flick, Louise ; Hale, Daniel ; Holl, Jane ; Hovell, Melbourne ; Hudak, Mark ; Paneth, Nigel ; Specker, Bonny ; Wilhelm, Mari S ; Wyatt, Sharon. / New models for large prospective studies : Is there a risk of throwing out the baby with the bathwater?. In: American Journal of Epidemiology. 2013 ; Vol. 177, No. 4. pp. 285-289.
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