Find research datasets worth reusing
Search datasets from major research repositories and use ShareScore to quickly assess how well each record supports discovery, access, and reuse.
3,996
datasets available to search
ShareScore release 0.7.1
Dataset results
3,996 results for “registry”
Long-term Evaluation of the Linox Family ICD Leads Registry (GALAXY)
ClinicalTrials.gov study NCT00836589. IPD Sharing: Not stated. Countries: 1. Publications: 1.
Type 3 Von Willebrand International Registries Inhibitor Prospective Study
ClinicalTrials.gov study NCT02460458. IPD Sharing: UNDECIDED. Countries: 10. Publications: 118.
Neuroimmunology Registry and Biobank
ClinicalTrials.gov study NCT06958341. IPD Sharing: NO. Countries: 1. Publications: 9.
Single-centre, Registry Trial, the Patients Presented With Stable Coronary Artery Disease
ClinicalTrials.gov study NCT02364778. IPD Sharing: Not stated. Countries: 1. Publications: 1.
PARTNER II Trial: Placement of AoRTic TraNscathetER Valves II - Nested Registry 3/Valve-in-Valve
ClinicalTrials.gov study NCT03225001. IPD Sharing: NO. Countries: 2. Publications: 2.
A Registry for Comparing Catheter-Related Infection Rates Among Various Shunt Systems in the Treatment of Hydrocephalus
ClinicalTrials.gov study NCT00280904. IPD Sharing: Not stated. Countries: 6. Publications: 1.
Temporal Trends of Thrombolysis Treatment in Chinese Acute Ischemic Stroke (AIS) Patients From 2007-2017: Analysis of China National Stroke Registry (CNSR) I, II, and III; CTP-Draft Review Performed;
ClinicalTrials.gov study NCT04290494. IPD Sharing: YES. Countries: 1. Publications: 0.
CAPRI National Juvenile Idiopathic Arthritis Registry
ClinicalTrials.gov study NCT03245801. IPD Sharing: YES. Countries: 1. Publications: 12.
Advance Cardiac Resynchronization Therapy (CRT) Registry
ClinicalTrials.gov study NCT01805154. IPD Sharing: NO. Countries: 9. Publications: 2.
Single nucleotide polymorphisms, environmental data and R scripts used in the work: A donor registry: Genomic analyses of Posidonia australis seagrass meadows identifies adaptive genotypes for future-proofing
Open the record for dataset details and reuse information.
Risk factors for cardiovascular disease (CVD) in adults with type 1 diabetes: findings from prospective real-life T1D exchange registry
Open the record for dataset details and reuse information.
Data from: Endovascular treatment in older adults with acute ischemic stroke in the MR CLEAN Registry
<p><strong>Objective</strong>: To explore clinical outcomes in older adults with acute ischemic stroke treated with endovascular thrombectomy (EVT).</p> <p><strong>Methods</strong>: We included consecutive patients (2014–2016) with an anterior circulation occlusion undergoing EVT from the MR CLEAN Registry. We assessed the effect of age (dichotomized at ≥80 years, and as continuous variable) on the modified Rankin Scale [mRS] score at 90 days, symptomatic intracranial hemorrhage (sICH), and reperfusion rate. The association between age and mRS was assessed with multivariable ordinal logistic regression, and a multiplicative interaction term was added to the model to assess modification of reperfusion by age on outcome.</p> <p><strong>Results</strong>: 380/1526 (25%) of patients were 80 years or older (=older adults). Older adults had a worse functional outcome than younger patients (adjusted common OR for an mRS shift towards better outcome: 0.31, 95%CI 0.24–0.39). Mortality was also higher in older adults (51% vs. 22%, aOR 3.12, 95%CI 2.33–4.19). There were no differences in proportion of patients with mRS 4-5, sICH, or reperfusion rates. Successful reperfusion was more strongly associated with a shift towards good functional outcome in older adults than in younger patients (acOR 3.22, 95%CI 2.04–5.10 vs. 2.00, 95%CI 1.56–2.57, P<sub>interaction</sub>=0.026).</p> <p><strong>Conclusion</strong>: Older age is associated with an increased absolute risk of poor clinical outcome, while the relative benefit of successful reperfusion seems to be higher in these patients. These results should be taken into consideration when selecting older adults for EVT.</p>
Data from: Clinical Outcomes Associated with the use of the NexSite™ Hemodialysis Catheter with New Exit Barrier Technology: Results from a Prospective, Observational Multi-center Registry Study
Purpose: Decreasing the risk of catheter related bloodstream infections (CRBSIs) remains a key focus for improving outcomes and reducing cost of care for hemodialysis (HD) patients. Recent studies demonstrate CRBSI rates can be improved by managing bacterial colonization at the catheter exit site. Herein we present the results of a study documenting the clinical performance of the NexSite® HD catheter, a new tunneled central venous catheter which incorporates Exit Site Management (ESM) technology. Methods: We conducted an observational study using a prospective, multi-center registry of HD patients implanted with the NexSite® HD catheter. The primary endpoint for the study was CRBSI rate for a period up to 180-days following catheter placement. Secondary endpoints included device placement success rate, exit site healing, development of an exit site or tunnel infection, and early or late non-infectious catheter-related complications. All reasons for early non-elective catheter removal were recorded. Results: A total of 115 HD patients at 6 sites were included in the final analysis. Cumulative catheter use was 10,924 days with a mean duration of 95 days. Seven patients experienced CRBSIs during the study period resulting in a CRBSI rate of 0.64 per 1,000 catheter-days. Seventy-four patients (64.3%) had either elective catheter removal (n=56) or utilized the catheter for the entire 180-day observation period (n=18). Thirty-five patients (30%) underwent non-elective device removal either due to CRBSI (n=5), low flow (n=16), exit site issues (n=7), or for other causes (n=7). Six patients died during the observation period with 1 death due to CRBSI-associated complications and the remaining 5 deaths attributed to non-device related causes. Conclusion: Our findings demonstrate that the NexSite HD catheter equipped with ESM technology can achieve a CRBSI rate in compliance with the NKF KDOQI (National Kidney Foundation Kidney Disease Outcome Quality Initiatives) Clinical Performance Guidelines stated goal of less than 1.0/1,000 catheter-days when used in hemodialysis patients using current standard of care nursing protocols.
A Metadata Application Profile for KOS Vocabulary Registries
<p>This paper reports on the end-products of a Dublin Core Application Profile for KOS Resources (KOS-AP) developed by a DCMI Task Group, which builds on work done by the NKOS group during the last decade. Included are user scenarios, a FRBR-based domain model, the attributes of KOS <i>work, expression, </i>and <i>manifestation</i> and the associated metadata elements defined in the context of user tasks. With the testing of real KOS systems that involve multiple editions, languages, delivery formats, and derivations, (such as the Dewey Decimal Classification 22nd edition and of the ASIS Thesaurus 3rd edition), the authors identified some unique issues related to KOS descriptions, for example the designation of a '<i>work'</i> in theory and practice, and the shift of management level from the whole KOS expression to concept- and label-based electronic systems. This KOS-AP effort is becoming more meaningful with the fast development of Linked Data, the success of which depends heavily on the sharing of standardized value vocabularies. The theoretical exploration, the conceptual model, and the core elements to be used for describing and accessing KOS products can be implemented by KOS registries and used in microdata of KOS Websites, as well as be adopted for use by other types of specifications that share common characteristics of KOS, such as frequently updated, translated, and derived handbooks, technical manuals, and schemas. </p>
iGEM Parts Registry Dump
Open the record for dataset details and reuse information.
Supplemental files for Clinical outcome after endovascular treatment in patients with active cancer and ischemic stroke: a MR CLEAN Registry substudy
<p>Supplemental files for Clinical outcome after endovascular treatment in patients with active cancer and ischemic stroke: a MR CLEAN Registry substudy</p>
Generalizable EHR-R-REDCap pipeline for a national multi-institutional rare tumor patient registry
<p><strong>Objective</strong>: To develop a clinical informatics pipeline designed to capture large-scale structured EHR data for a national patient registry.</p> <p><strong>Materials and Methods</strong>: The EHR-R-REDCap pipeline is implemented using R-statistical software to remap and import structured EHR data into the REDCap-based multi-institutional Merkel Cell Carcinoma (MCC) Patient Registry using an adaptable data dictionary.</p> <p><strong>Results</strong>: Clinical laboratory data were extracted from EPIC Clarity across several participating institutions. Labs were transformed, remapped and imported into the MCC registry using the EHR labs abstraction (eLAB) pipeline. Forty-nine clinical tests encompassing 482,450 results were imported into the registry for 1,109 enrolled MCC patients. Data-quality assessment revealed highly accurate, valid labs. Univariate modeling was performed for labs at baseline on overall survival (N=176) using this clinical informatics pipeline.</p> <p><strong>Conclusion</strong>: We demonstrate feasibility of the facile eLAB workflow. EHR data is successfully transformed, and bulk-loaded/imported into a REDCap-based national registry to execute real-world data analysis and interoperability.</p>
Quality of life in ankylosing spondylitis - concise registry data
<p>Extract of data from the “Radon indication registry for the assessment of pain reduction, increase of quality of life and improvement in body functionality throughout low-dose radon hyperthermia therapy” (registration ID ISRCTN67336967; <a href="https://doi.org/10.1186/ISRCTN67336967">https://doi.org/10.1186/ISRCTN67336967</a>) used for secondary analyses aiming to to explore whether spa treatment including low-dose radon results in sustained significant and clinically relevant improvement of QoL in patients with AS.</p>
Supplementary material 1 from: Zieritz A, Armas B, Aldridge D (2014) Registry of non-native species in the Two Seas region countries (Great Britain, France, Belgium and the Netherlands). NeoBiota 23: 65-80. https://doi.org/10.3897/neobiota.23.5665
Registry of non-native species in the Two Seas region countries (Great Britain, France, Belgium and the Netherlands): Explanation note: The MS Excel file contains two worksheets:
Registry of introduced terrestrial molluscs in Belgium
<p><strong>Introduction</strong></p> <p>The Registry of introduced terrestrial molluscs in Belgium is a species checklist dataset maintained by Thierry Backeljau at the Royal Belgian Institute for Natural Sciences (RBINS). It contains information on all (29) non-native terrestrial molluscs occurring in the wild in Belgium since 1800. The list was originally compiled for EASIN (<a href="https://easin.jrc.ec.europa.eu/easin">https://easin.jrc.ec.europa.eu/easin</a>) and is based on a literature survey and information from RBINS. The dataset can be used for researching and managing terrestrial alien molluscs or compiling regional and national registries of alien species.</p> <p>The registry is maintained as a Google Spreadsheet and exported and uploaded here as an Excel file and csv files for each sheet. The dataset is also published for the TrIAS project (Tracking Invasive Alien Species <a href="http://trias-project.be">http://trias-project.be</a>, Vanderhoeven et al. 2017) as a standardized Darwin Core Archive, openly available on GBIF (<a href="https://doi.org/10.15468/t13kwo">https://doi.org/10.15468/t13kwo</a>).</p> <p>Issues with the dataset can be reported at <a href="https://github.com/trias-project/alien-mollusca-checklist">https://github.com/trias-project/alien-mollusca-checklist</a></p> <p><strong>Files</strong></p> <ul> <li> <p><strong>alien_mollusca_checklist.xlsx</strong>: Excel export of the Google Spreadsheet in which the data are maintained.</p> </li> <li> <p><strong>metadata.csv</strong>: definitions for the fields in <code>taxa.csv</code>, <code>references.csv</code>, <code>synonyms.csv</code> and <code>vernacular_names.csv</code>, with information about the content, the number of values allowed, the necessity of a controlled vocabulary and whether or not the information is obligatory.</p> </li> <li> <p><strong>taxa.csv</strong>: scientific names and higher classification, as well as the species’ presence or absence in Belgium, its first and last observation date, native range, introduction pathway and degree of establishment.</p> </li> <li> <p><strong>references.csv</strong>: all references used to compile the dataset.</p> </li> <li> <p><strong>synonyms.csv</strong>: synonyms for the scientific names in <code>taxa.csv</code>.</p> </li> <li> <p><strong>vernacular_names.csv</strong>: Dutch, French, English and German vernacular names for the scientific names in <code>taxa.csv</code>.</p> </li> </ul>
ScienceDex guides
Understand access before you commit
These curated guides explain access requirements, typical timelines, costs, and reuse considerations for widely used research datasets.
Allen Brain Atlas
Allen Brain Atlas is an Allen Institute collection of brain map atlases, datasets, APIs, and analysis tools covering mouse, human, and non-human primate brain resources.
Annotated Behaviour and Observability Dataset (ABODe)
ABODe is a University of Edinburgh DataShare dataset for behavior classification in group-housed mice using home-cage video, identities, bounding boxes, ground-plate positions, and annotator labels.
DANDI Archive for NWB datasets
DANDI is a BRAIN Initiative archive for publishing and sharing neurophysiology data, including electrophysiology, optophysiology, and behavioral data packaged as NWB and related standards.
International Brain Laboratory public data
The International Brain Laboratory public data releases expose standardized mouse decision-making experiments, including Neuropixels recordings, widefield calcium imaging, behavior, and session metadata accessed through the ONE API.
OpenNeuro
OpenNeuro is a free, open platform for sharing neuroimaging datasets, with public search, dataset pages, and download paths for web, S3, DataLad, and the OpenNeuro CLI.