The Value of Patient Registries to Advance Basic and Translational Research in the Area of Traumatic Brain Injury

Melissa C Duff, Emily L Morrow, Malcolm Edwards, Ryan McCurdy, Sharice Clough, Nirav Patel, Kimberly Walsh, Natalie V Covington

Research output: Contribution to journalReview articlepeer-review

2 Scopus citations

Abstract

The number of individuals affected by traumatic brain injury (TBI) is growing globally. TBIs may cause a range of physical, cognitive, and psychiatric deficits that can negatively impact employment, academic attainment, community independence, and interpersonal relationships. Although there has been a significant decrease in the number of injury related deaths over the past several decades, there has been no corresponding reduction in injury related disability over the same time period. We propose that patient registries with large, representative samples and rich multidimensional and longitudinal data have tremendous value in advancing basic and translational research and in capturing, characterizing, and predicting individual differences in deficit profile and outcomes. Patient registries, together with recent theoretical and methodological advances in analytic approaches and neuroscience, provide powerful tools for brain injury research and for leveraging the heterogeneity that has traditionally been cited as a barrier inhibiting progress in treatment research and clinical practice. We report on our experiences, and challenges, in developing and maintaining our own patient registry. We conclude by pointing to some future opportunities for discovery that are afforded by a registry model.

Original languageEnglish (US)
Article number846919
Pages (from-to)846919
JournalFrontiers in Behavioral Neuroscience
Volume16
DOIs
StatePublished - Apr 25 2022

Bibliographical note

Funding Information:
This work was supported by National Institute of Neurological Disorders and Stroke (NINDS) grant R01 NS110661 to MD.

Publisher Copyright:
Copyright © 2022 Duff, Morrow, Edwards, McCurdy, Clough, Patel, Walsh and Covington.

Keywords

  • heterogeneity
  • intervention
  • outcome
  • registry
  • traumatic brain injury

PubMed: MeSH publication types

  • Journal Article
  • Review

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