Developing a data repository of standard concussion assessment clinical data for research involving college athletes

Abstract

In sports concussion research, obtaining quality data from a sufficient number of participants to reach statistical power has been a particular problem. In addition, the necessary requirements of accessibility, informed consent, and confidentiality must be met. There is need to develop more efficient and controlled methods for collecting data to answer research questions in this realm, but the ability to collect and store these data in an efficient manner at the local level is limited. By virtue of their training, neuropsychologists can play a key role in improving data collection quality. The purpose of this paper is to describe a data repository that has been developed in the context of a university sports medicine concussion management program that includes baseline and postinjury data from student athletes. Diagnostic information, basic health information, current symptoms, neuropsychological test data, balance and vestibular data, and visual processing data are currently included in the standard of care for athletes; however, the process described need not be limited to these types of data. While a national traumatic brain injury (TBI) data repository has been developed by the National Institute of Health (NIH), local repositories have not yet become common. Thus, the description of this project is of value at the local level in the United States and internationally.

Keywords: Clinical standard of care; Data collection standards; Data integrity; Data repository; Sports concussion.