Data Sharing and Data Registries in Physical Medicine and Rehabilitation

The field of physical medicine & rehabilitation (PM&R), along with all the disciplines it encompasses, has evolved rapidly in the past 50 years. The number of controlled trials, systematic reviews, and meta-analyses in PM&R increased 5-fold from 1998 to 2013. In recent years, professional, private, and governmental institutions have identified the need to track function and functional status across providers and settings of care and on a larger scale. Because function and functional status are key aspects of PM&R, access to and sharing of reliable data will have an important impact on clinical practice. We reviewed the current landscape of PM&R databases and data repositories, the clinical applicability and practice implications of data sharing, and challenges and future directions. We included articles that (1) addressed any aspect of function, disability, or participation; (2) focused on recovery or maintenance of any function; and (3) used data repositories or research databases. We identified 398 articles that cited 244 data sources. The data sources included 66 data repositories and 179 research databases. We categorized the data sources based on their purposes and uses, geographic distribution, and other characteristics. This study collates the range of databases, data repositories, and data-sharing mechanisms that have been used in PM&R internationally. In recent years, these data sources have provided significant information for the field, especially at the population-health level. Implications and future directions for data sources also are discussed.