Background: Patient registries represent a long-term data collection system that is a platform
for performing multiple research studies to generate real-world evidence. Many of these registries
use common data elements (CDEs) and link data from Electronic Health Records.
Objective: This study evaluated HIV registry features that contribute to the registry’s usability for
retrospective analysis of existing registry data or new prospective interventional studies.
Methods: We searched PubMed and ClinicalTrials.gov (CTG) to generate a list of HIV registries.
We used the framework developed by the European Medical Agency (EMA) to evaluate the registries
by determining the presence of key research features. These features included information
about the registry, request and collaboration processes, and available data. We acquired data dictionaries
and identified CDEs.
Results: We found 13 HIV registries that met our criteria, 11 through PubMed and 2 through CTG.
The prevalence of the evaluated features ranged from all 13 (100%) having published key registry
information to 0 having a research contract template. We analyzed 6 data dictionaries and identified
14 CDEs that were present in at least 4 of 6 (66.7%) registry data dictionaries.
Conclusion: The importance of registries as platforms for research data is growing and the presence of
certain features, including data dictionaries, contributes to the reuse and secondary research capabilities
of a registry. We found some features such as collaboration policies were in the majority of registries
while others such as, ethical support, were in a few and are more for future development.