SynthesisCurrent HIV research2019
Evaluation of Research Accessibility and Data Elements of HIV Registries.
Synthesis in Current HIV research, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
2 citing papers in PubMed.
- The use of electronic PROMs provides same outcomes as paper version in a spine surgery registry. Results from a prospective cohort study.European spine journal : official publication of the European Spine Society, the European Spinal Deformity Society, and the European Section of the Cervical Spine Research Society · 2021Article
- Analysis of data dictionary formats of HIV clinical trials.PloS one · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
Abstract
backgroundPatient 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.
objectiveThis study evaluated HIV registry features that contribute to the registry's usability for retrospective analysis of existing registry data or new prospective interventional studies.
methodsWe 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.
resultsWe 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.
conclusionThe 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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.