TY  - JOUR
PY  - 2022//
TI  - The value of patient registries to advance basic and translational research in the area of traumatic brain injury
JO  - Frontiers in behavioral neuroscience
A1  - Duff, Melissa C.
A1  - Morrow, Emily L.
A1  - Edwards, Malcolm
A1  - McCurdy, Ryan
A1  - Clough, Sharice
A1  - Patel, Nirav
A1  - Walsh, Kimberly
A1  - Covington, Natalie V.
SP  - e846919
EP  - e846919
VL  - 16
IS  - 
N2  - 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.<p />  <p>Language: en</p>
LA  - en
SN  - 1662-5153
UR  - http://dx.doi.org/10.3389/fnbeh.2022.846919
ID  - ref1
ER  -