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3,996 results for “registry”
SSHOC Training Material Video 1 - What is the Ethnic and Migrant Minorities Survey Registry? - training video in English, French and Spanish
<p>A generic video, like the one produced about the SSH Marketplace, clearly and succinctly introducing and presenting the EMM Survey Registry. Would serve as an introductory video to train any new user on what the EMM Survey Registry is and who this tool is for. Would also present all available resources about the Registry (so introducing the full set of training materials available about the Registry)</p> <p>This has been produced in English, French, Spanish</p>
SSHOC Training Material Video 3 - Contributing metadata to the COVID-19 collection of the Ethnic and Migrant Minorities (EMM) Survey Registry as a data producer - training video in English, French and Spanish
<p>Contributing metadata to the COVID-19 collection of the Ethnic and Migrant Minorities (EMM) Survey Registry as a data producer</p> <p>A training video targeting COVID-19 survey producers to entice contributions to the COVID-19 collection of the EMM Survey Registry<br> <strong>Target Audience for the video</strong>: Survey producers (academic and non-academic) of COVID-19 surveys with EMM respondents</p>
SSHOC Training Material Video 2 - How to exploit the Ethnic and Migrant Minorities Survey Registry as an academic and non-academic user - training video in English, French and Spanish
<p>A training video about how to search for and learn about surveys using the EMM Survey Registry, both as an academic and non-academic user.</p> <p>This video has been produced in English, French, Spanish</p>
TAXREF-LD: Knowledge Graph of the French taxonomic registry
<p>TAXREF-LD is a Linked Data knowledge graph representing <a href="https://inpn.mnhn.fr/programme/referentiel-taxonomique-taxref?lg=en">TAXREF</a>, the French national taxonomical register for fauna, flora and fungus, that covers mainland France and overseas territories.</p> <p>TAXREF-LD is a joint initiative of the <a href="http://www.patrinat.fr/">UMS Patrinat</a> of the <a href="http://www.mnhn.fr/">National Museum of Natural History</a>, and the <a href="http://www.i3s.unice.fr/">I3S laboratory</a>, <a href="https://univ-cotedazur.fr">University Côte d'Azur</a>, <a href="https://www.inria.fr">Inria</a>, <a href="https://www.cnrs.fr">CNRS</a>.</p> <p>Homepage: https://github.com/frmichel/taxref-ld/</p>
Characteristics of AIFA registries up to 2019
<p>Extracted information from AIFA registries up to December 2019 about the background to establishment and construct of the registry for each product/indication including key elements of regulatory approval from EMA. Identifying those that are orphan medicinal products.</p> <p> </p>
ASSESSMENT OF ADHERENCE TO NEW ORAL ANTICOAGULANTS IN ATRIAL FIBRILLATION PATIENTS WITHIN THE OUTPATIENT REGISTRY PROFILE. PROSPECTIVE OBSERVATIONAL STUDY (ANTEY study)
<p><strong>Rationale</strong></p> <p>Prevention of stroke and thromboembolic complications in non-valvular atrial fibrillation is one of the most common indications for the use of all NOACs and warfarin in cardiology. The issue of regular intake of all OACs, i.e. the issue of adherence to anticoagulation therapy, is paramount for better treatment. The problem of assessment of different aspects of adherence to OACs in patients with atrial fibrillation within an outpatient registry is of current interest.</p> <p><strong>Primary</strong> <strong>Study</strong> <strong>Objectives</strong></p> <p>The aim of the present study is to assess adherence to therapy and factors associated with adherence in patients with CV disease complicated by non-valvular atrial fibrillation requiring OAC treatment within the outpatient registry PROFILE (prospective, observational study).</p> <ol> <li>Data collection in patients with non-valvular atrial fibrillation requiring OAC treatment included in the registry</li> <li>Evaluation of actual patient adherence to OACs</li> </ol> <p><strong>Secondary Study Objective(s)</strong></p> <ol> <li>Evaluation of potential patient adherence to OACs</li> <li>Determination of most significant factors associated with adherence to OACs in patients with non-valvular AF</li> <li>Validation of new original questionnaire</li> <li>Evaluation of doctor’s adherence to OAC prescription according to Guidelines (ESC). Management of atrial fibrillation,2016)</li> </ol> <p><strong>Material and methods</strong></p> <p>.The study included 201 patients with nonvalvular AF from the outpatient "PROFILE" registry, 118 (58,7%) males. The mean age was 71,1 ±8,7 years. The study protocol consisted of the inclusion visit (V0), 6-month follow-up visit (V1), and phone contact 1 year after V0 (follow-up, FU). In V0, all patients were prescribed one of the NOACs. At V1 doctors could recommend warfarin or another NOAC to patients, who have refused to take prescribed NOAC. Medical adherence was determined using the original questionnaire</p> <p><strong>Inclusion Criteria (detailed)</strong></p> <ul> <li>Men and women above 18 years of age who were included in the "PROFILE" registry by the start of the observational study</li> <li>Presence of written informed consent to participate in the study, fill in the study questionnaires, and have personal data analyzed</li> <li>Presence of any form of non-valvular atrial fibrillation with CHA<sub>2</sub>DS<sub>2</sub>-VASc score of ≥1 or patients with CHA<sub>2</sub>DS<sub>2</sub>-VASc score = 0, who are already taking OAK</li> </ul> <p><strong>Exclusion Criteria</strong></p> <p>Patients with high bleeding risk, including patients with:</p> <ul> <li>Congenital or acquired bleeding disorders</li> <li>Uncontrolled resistant hypertension</li> <li>Exacerbation of gastric and duodenal ulcer</li> <li>Vascular retinopathy</li> <li>Recent history of intracranial or intracerebral hemorrhage</li> <li>Pathology of the brain and spinal cord vessels</li> <li>Recent history of the brain, spinal cord, or eye surgery</li> <li>History of bronchiectasis or pulmonary hemorrhage</li> <li>A CHA<sub>2</sub>DS<sub>2</sub>-VASc score of 0 (OACs are not indicated)</li> <li>Pregnancy, lactation</li> <li>Planned surgery</li> <li>Known hypersensitivity to ingredients of medications used in the study</li> </ul> <p><strong>Visit schedule</strong></p> <p>Visit schedule</p> <p>Two visits at 6-month intervals are scheduled for each patient as part of routine clinical practice:</p> <p>Visit 0– visit at study entry:</p> <ul> <li>receiving written informed consent to participate in research from patients</li> <li>inclusion in the program</li> <li>assessment of inclusion and exclusion criteria</li> <li>verification of non-valvular atrial fibrillation diagnosis (according to medical documentation, confirming the history of atrial fibrillation: ECG, Holter monitoring, etc..)</li> <li>collecting information on received medication therapy, including OACs</li> <li>physical examination of patients (measurements of blood pressure, heart rate, height, weight, waist circumference)</li> <li>questioning of patients to determine potential and actual adherence to OACs</li> <li>computation of points on the scale CHA<sub>2</sub>DS<sub>2</sub>-VASc and HAS-BLED to determine the indications for the appointment of the OACs and the identification of an increased risk of bleeding</li> <li>to determine the INR in patients who agreed to replace the use of warfarin with one of the NOACs</li> <li>prescription of OACs according to routine clinical practice and official labels for these medications</li> <li>instructing patients (according to the specifically designed scheme) to regularly take prescribed medications, be aware of precautionary measures when taking OACs, telling them about the pros and cons of treatment with OACs</li> </ul> <p>Visit 1 – visit at 6 months after the Visit 0:</p> <ul> <li>collecting information on patients’ compliance with doctor’s recommendations</li> <li>collecting information on patients’ actual medication therapy</li> <li>collecting information on the safety of treatment with OACs (in case the patient has been taking them), recording all adverse events that occurred during the study period</li> <li>measurements of blood pressure, heart rate as a part of routine clinical practice</li> <li>questioning of patients to determine potential and actual adherence to OACs</li> </ul> <p>FU - follow-up calls to patients (one year)</p> <p>Phone contact to determine patient’s life status, possible (fatal and non-fatal complications of non-valvular atrial fibrillation) and fill (after receiving patient’s consent) the original questionnaire.</p> <p><strong>Primary Outcome</strong></p> <p>The proportion of complete, partial adherent and non-adherent patients according to the original questionnaire</p> <p><strong>Secondary Outcomes </strong></p> <ul> <li>The proportion of potentially adherent patients (according to the original questionnaire)</li> <li>Identification of baseline characteristics associated with adherence</li> <li>The proportion of doctors prescribed OAC according to guidelines.</li> </ul> <p><strong>Safety Outcomes </strong></p> <p>Adverse events and outcomes were recorded from the start of treatment with the OAC until the end of the observational study period. The doctor evaluated the severity of adverse events and outcomes if necessary took measures for their medical treatment according to current clinical practice.</p> <p> </p> <p> </p>
SSHOC Training Material Video 6 - Contributing metadata to the Ethnic and Migrant Minorities (EMM) Survey Registry as a local/regional/national governmental department or EU agency/department or international organisation - training video in English, French and Spanish
<p>Contributing metadata to the Ethnic and Migrant Minorities (EMM) Survey Registry as a local/regional/national governmental department or EU agency/department or international organisation.</p> <p>A demo-based training video targeting statistical units in local/regional/national governmental departments to highlight why they should invest in and document their surveys on the EMM Survey Registry</p> <p><strong>Target Audience for the video: </strong>Statistical units in local/regional/national governmental departments producing quantitative surveys on ethnic and migrant minorities’ integration and/or inclusion</p>
Platforms & registries for sharing participant-level COVID-19 data
<p>This dataset presents an overview of platforms and registries that store, harmonize, and, in some cases, share COVID-19-related participant-level data, including clinical-epidemiological, human and pathogen OMICs, and high dimensional imaging data. The dataset provides an in-depth review of adherence to the <a href="https://www.go-fair.org/fair-principles/">FAIR principles</a>, governance, benefit sharing and other ethical concerns related to resources that share harmonized, participant-level data for the research response to COVID-19. Systematic searches were conducted between April 2020 and June 2021 to identify relevant platforms and registries. We applied natural language processing to the CORD-19 dataset in March of 2021 and consulted with COVID-19 focused researchers in Asia, Africa, and Latin America to identify non-English language COVID-19-related data sharing resources.</p>
AGMT (Arbeitsgemeinschaft medikamentöse Tumortherapie): Head and neck tumor registry Austria
<p>A metadataset describing the patient registry: Head and neck tumor registry Austria. </p>
Pregnancy Registry to Collect Long-Term Safety Data From Women Treated With HyQvia
ClinicalTrials.gov study NCT02556775. IPD Sharing: YES. Countries: 5. Publications: 1.
Distribution of trial registry numbers within full-text PubMed Central - full dataset of discovered links
Open the record for dataset details and reuse information.
Patient-reported outcomes predict return to work and health-related quality of life 6 months after cardiac rehabilitation: Results from a German multi-centre registry (OutCaRe): dataset
<p>This is the resulting data set from the prospective observational study (available cases at the time of follow up monitoring) OutCaRe, that is the basis of all results presented in the article "Patient-reported outcomes predict return to work and health-related quality of life 6 months after cardiac rehabilitation: Results from a German multi-centre registry (OutCaRe)".</p> <p>OutCaRe is a registered study (https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00011418).</p>
Data from Mehra et al. (2020-05-29), "Hydroxychloroquine or chloroquine with or without a macrolide for treatment of COVID-19: a multinational registry analysis"
<p>Recent <a href="http://doi.org/dw8t">reports</a> have identified errors and implausible results in the <a href="http://doi.org/ggwzsb">title paper</a>, few of which have been corrected to date. To facilitate analysis, I provide a spreadsheet containing all data from tables in the corrected version (2020-05-29), from both the main text (html) and supporting information (PDF).</p> <p><br> The data is uploaded to this publicly-funded repository with the <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7255293/">permission</a> of the copyright holder: <em>"Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories ... with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source."</em> Text and data mining are also <a href="http://web.archive.org/web/20200602210529/https://www.elsevier.com/connect/coronavirus-information-center">permitted</a>: <em>"These articles are also available to download with rights for full text and data mining, re-use and analyses for as long as needed."</em></p>
Risk factors for cardiovascular disease (CVD) in adults with type 1 diabetes: findings from prospective real-life T1D exchange registry
<p>Context</p> <p>Cardiovascular disease (CVD) is a major cause of mortality in adults with type 1 diabetes.</p> <p>Objective</p> <p>We prospectively evaluated CVD risk factors in a large, contemporary cohort of adults with type 1 diabetes living in the United States.</p> <p>Design</p> <p>Observational study of CVD and CVD risk factors over a median of 5.3 years.</p> <p>Setting</p> <p>The T1D Exchange clinic network.</p> <p>Patients</p> <p>Adults (age ≥18 years) with type 1 diabetes and without known CVD diagnosed before or at enrollment.</p> <p>Main Outcome Measure</p> <p>Associations between CVD risk factors and incident CVD were assessed by multivariable logistic regression.</p> <p>Results</p> <p>The study included 8,727 participants (53% female, 88% non-Hispanic white, median age 33 years [IQR=21, 48], type 1 diabetes duration 16 years [IQR=9, 26]). At enrollment, median HbA1c was 7.6% (66 mmol/mol) [IQR=6.9 (52), 8.6 (70)], 33% used a statin, and 37% used blood pressure medication. Over a mean follow-up of 4.6 years, 325 (3.7%) participants developed incident CVD. Ischemic heart disease was the most common CVD event. Increasing age, BMI, HbA1c, presence of hypertension and dyslipidemia, increasing duration of diabetes, and diabetic nephropathy were associated with increased risk for CVD. There were no significant gender differences in CVD risk.</p> <p>Conclusion</p> <p>HbA1c, hypertension, dyslipidemia and diabetic nephropathy are important risk factors for CVD in adults with type 1 diabetes. A longer follow-up is likely required to assess the impact of other traditional CVD risk factors on incident CVD in the current era.</p>
WHO International Clinical Trials Registry Platform (ICTRP), April 2015
<p>The World Health Organization (WHO) International Clinical Trials Registry Platform (ICTRP) dataset, retrieved in April 2015.</p> <p>At the time of writing, the WHO ICTRP does not have any way for the general public to retrieve their complete dataset. They provided special access to us (ClinicalTrials.gov) to retrieve the data, and gave permission for us to make the data publicly available.</p> <p>We distinguish records (a trial as registered in a specific registry) and variants (different versions of a record within that registry). Only the EU Clinical Trials Register (EUCTR) has multiple variants for some records, one for each member state where the trial was registered.</p> <p>The dataset consists of 320,790 variants of 285,177 unique records from sixteen registries. Variants were retrieved one-at-a-time over the course of the first week of April, as requests took ~ 2 seconds each to resolve. A list of non-ClinicalTrials.gov records was provided by the WHO, and a list of ClinicalTrials.gov records was retrieved from ClinicalTrials.gov.</p>
Male-female disparity in clinical features and significance of mild vertebral fractures in community-dwelling residents aged 50 and over: A Japanese cohort survey randomly sampled from a basic resident registry
Open the record for dataset details and reuse information.
MaStR power unit registry for powerd-data
<p>The data set contains selected data from the <a href="https://www.marktstammdatenregister.de/MaStR">Marktstammdatenregister</a> for powerd-data pipeline.</p> <p><strong>Dump version: 2024-01-08</strong></p> <p>The data set has been downloaded and processed with the software <a href="https://github.com/OpenEnergyPlatform/open-MaStR">open-MaStR</a>.<br>Compared to the <a href="../doi/10.5281/zenodo.6807425">official open-MaStR releases</a> a custom format postprocessing has been applied.</p> <p>License information:<br>Marktstammdatenregister - © Bundesnetzagentur für Elektrizität, Gas, Telekommunikation, Post und Eisenbahnen | <a href="https://www.govdata.de/dl-de/by-2-0">DL-DE-BY-2.0</a></p>
Quality and Utility of European Cardiovascular and Orthopaedic Registries for the Regulatory Evaluation of Medical Device Safety and Performance Across the Implant Lifecycle: A Systematic Review - Dataset
<p><strong>Background: </strong>The European Union Medical Device Regulation (MDR) requires manufacturers to undertake post-market clinical follow-up (PMCF) to assess the safety and performance of their devices following approval and Conformité Européenne (CE) marking. The quality and reliability of device registries for this Regulation have not been reported. As part of the Coordinating Research and Evidence for Medical Devices (CORE-MD) project, we identified and reviewed European cardiovascular and orthopaedic registries to assess their structures, methods, and suitability as data sources for regulatory purposes.</p> <p><strong>Methods: </strong>Regional, national and multi-country European cardiovascular (coronary stents and valve repair/replacement) and orthopaedic (hip/knee prostheses) registries were identified using a systematic literature search. Annual reports, peer-reviewed publications, and websites were reviewed to extract publicly available information for 33 items related to structure and methodology in six domains and also for reported outcomes.</p> <p><strong>Results: </strong>Of the 20 cardiovascular and 26 orthopaedic registries fulfilling eligibility criteria, a median of 33% (IQR: 14%-71%) items for cardiovascular and 60% (IQR: 28%-100%) items for orthopaedic registries were reported, with large variation across domains. For instance, no cardiovascular and 16 (62%) orthopaedic registries reported patient/ procedure-level completeness. No cardiovascular and 5 (19%) orthopaedic registries reported outlier performances of devices, but each with a different outlier definition. There was large heterogeneity in reporting on items, outcomes, definitions of outcomes, and follow-up durations.</p> <p><strong>Conclusion: </strong>European cardiovascular and orthopaedic device registries could improve their potential as data sources for regulatory purposes by reaching consensus on standardised reporting of structural and methodological characteristics to judge the quality of the evidence as well as outcomes.</p>
Event Registry titles only dataset with multiple extracted features (both sparse and dense)
<p>This is the same content as:</p> <p>Guillaume Bernard. (2022). Event Registry dataset with multiple extracted features (both sparse and dense) (1.0) [Data set]. Zenodo. https://doi.org/10.5281/zenodo.6630367</p> <p>But with titles of articles only.</p>
SSHOC Training Material Video 5 - Leveraging the the Ethnic and Migrant Minorities' (EMM) Survey Registry for public policy - training video in English, French and Spanish
<p>EMM Survey Registry - D9.4 - Video 5 Live Demo - Policy Making Stackholders (front- and back-end)</p> <p><strong>The video will begin by reiterating what the EMM Survey Registry is and why policy-making stakeholders (e.g. civil society and think tank communities; policymakers) interested in quantitative surveys on ethnic and migrant minorities’ integration and/or inclusion should be using this service. It will then explain how this target user group can both leverage the EMM Survey Registry for finding and learning about surveys, as well as showcasing surveys they have produced and/or have been involved in.</strong></p>
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.