Background: The ability to apply standard and interoperable solutions for implementing and managing medical registries as well as aggregate, reproduce, and access data sets from legacy formats and platforms to advanced standard formats and operating systems are crucial for both clinical healthcare and biomedical research settings.
Purpose: Our study describes a reproducible, highly scalable, standard framework for a device registry implementation addressing both local data quality components and global linking problems.
Methods And Results: We developed a device registry framework involving the following steps: (1) Data standards definition and representation of the research workflow, (2) Development of electronic case report forms using REDCap (Research Electronic Data Capture), (3) Data collection according to the clinical research workflow and, (4) Data augmentation by enriching the registry database with local electronic health records, governmental database and linked open data collections, (5) Data quality control and (6) Data dissemination through the registry Web site. Our registry adopted all applicable standardized data elements proposed by American College Cardiology / American Heart Association Clinical Data Standards, as well as variables derived from cardiac devices randomized trials and Clinical Data Interchange Standards Consortium. Local interoperability was performed between REDCap and data derived from Electronic Health Record system. The original data set was also augmented by incorporating the reimbursed values paid by the Brazilian government during a hospitalization for pacemaker implantation. By linking our registry to the open data collection repository Linked Clinical Trials (LinkedCT) we found 130 clinical trials which are potentially correlated with our pacemaker registry.
Conclusion: This study demonstrates how standard and reproducible solutions can be applied in the implementation of medical registries to constitute a re-usable framework. Such approach has the potential to facilitate data integration between healthcare and research settings, also being a useful framework to be used in other biomedical registries.
Download full-text PDF |
Source |
---|---|
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3723676 | PMC |
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0071090 | PLOS |
Elife
December 2024
Institute of Cognitive and Clinical Neuroscience, Central Institute of Mental Health, Medical Faculty Mannheim, Heidelberg University, Mannheim, Germany.
Chronic back pain (CBP) is a global health concern with significant societal and economic burden. While various predictors of back pain chronicity have been proposed, including demographic and psychosocial factors, neuroimaging studies have pointed to brain characteristics as predictors of CBP. However, large-scale, multisite validation of these predictors is currently lacking.
View Article and Find Full Text PDFEndocrinol Diabetes Metab
January 2025
Universidad Autónoma de Madrid, Department of Endocrinology and Nutrition, Hospital Universitario de La Princesa, Instituto de Investigación Sanitaria de La Princesa, Madrid, Spain.
Purpose: To investigate the impact of clinical and socio-economic factors on glycaemic control and construct statistical models to predict optimal glycaemic control (OGC) after implementing intermittently scanned continuous glucose monitoring (isCGM) systems.
Methods: This retrospective study included 1072 type 1 diabetes patients (49.0% female) from three centres using isCGM systems.
Asia Pac J Public Health
December 2024
Department of Science and Technology, Food and Nutrition Research Institute, DOST Compound, Taguig City, Metro Manila, Philippines.
In the Philippines, the co-occurrence of two or more types of malnutrition in an individual, also known as intra-individual double burden of malnutrition (DBM), has rarely been investigated. This study aimed to determine the prevalence of and the factors associated with DBM at the individual level among Filipino women of reproductive age (WRA) using the data collected from the 2018 Philippine Expanded National Nutrition Survey. For this study, intra-individual DBM was defined as the co-existence of overweight or obesity and anemia in an individual.
View Article and Find Full Text PDFJ Diabetes Sci Technol
December 2024
Clinical Diabetes, Appetite and Metabolism Laboratory, Garvan Institute of Medical Research, Sydney, NSW, Australia.
Introduction: Two phase 3 randomized controlled studies (ADJUNCT ONE (Clinicaltrials.gov: NCT01836523), ADJUNCT TWO (Clinicaltrials.gov: NCT02098395)) evaluated liraglutide (1.
View Article and Find Full Text PDFJ Mater Chem B
December 2024
School of Physics, University of Sydney, Sydney, NSW 2006, Australia.
Polymeric nanoparticles surface functionalised with fluorescent molecules hold significant potential for advancing diagnostics and therapeutic delivery. Despite their promise, challenges persist in achieving robust attachment of fluorescent molecules for real-time tracking. Weak physical adsorption, pH-dependent electrostatic capture, and hydrophobic interactions often fail to achieve stable attachment of fluorescent markers.
View Article and Find Full Text PDFEnter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!