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.
37
datasets available to search
ShareScore release 0.9.0
Dataset results
37 results for “registry based study”
Longitudinal observational study of pediatric patients with primary brain tumors: establishment of a hospital-based registry.
<p>Although tumors of the central nervous system (CNS) represent 2 % of all malignancies in general, they cause a disproportionately large morbidity and mortality and are the second most common form of cancer in children and the major solid tumor in childhood in the U.S., occurring in 21.3% of all children with malignant disease. The treatment of brain tumors in children and adolescents has evolved significantly in recent decades. Nowadays, most children with a diagnosis of brain tumor are treated properly and achieve prolonged survival. In order to obtain an overview of the impact of brain tumors, specialized registries, which provide information on all types of brain tumors, have emerged in several countries. Following on the pioneering Japanese and American experiences of specialized national records of brain tumors, other specialized registries were opened in European countries. This project aims to initiate a registry of the epidemiological profile of patients treated for CNS tumors in the Pediatric Cancer Center (CPC) of our hospital from January 2000 to December 2013, at diagnosis and during follow-up, updating information periodically. This data will be recorded in an electronic database capable of storing, retrieving and presenting information of interest. Prospectively recorded epidemiological data of patients diagnosed from January 2014 will be accrued, maintaining the database active to continuously record information on patients with CNS tumors treated in the CPC HIAS. Thus, creating a hospital registry of pediatric patients with CNS tumors. To this end, an instrument of data collection will be created using Google Apps (Google Inc., 2014), a digital platform with capacity for storage, creation and editing of documents and collaboration in real time over the cloud.</p>
Prognostic Impact of Increased Lymph Node Yield in Colorectal Cancer Patients With Synchronous Distant Metastasis: a Population-based Study of the US Database and a Chinese Registry
ClinicalTrials.gov study NCT05550701. IPD Sharing: NO. Countries: 1. Publications: 3.
Kidney function, kidney function decline, and the risk of dementia in older adults: a registry-based study
<p><span><b>Objective:</b> Community-based reports regarding the association between the estimated glomerular filtration rate (eGFR) and dementia risk show conflicting results. This study aims is to investigate the links between kidney function, kidney function decline and dementia incidence.</span></p> <p><span><b>Methods:</b> We analyzed the association of eGFR with the risk of dementia (defined as a new dementia diagnosis or initiation of dementia treatments) among 329,822 residents of Stockholm who accessed healthcare during 2006-2011, were ≥65 years, had no history of dementia or underwent kidney replacement therapy. We also estimated the rate of eGFR decline among 205,622 residents with repeated eGFR measurements during the first-year of observation and investigated its association with subsequent dementia risk. </span></p> <p><span><b>Results: </b>18,983 cases of dementia (5.8% of participants) were detected over a median follow-up of 5 years. Dementia incidence rates (IR) were progressively higher with lower eGFR: from 6.56/1000 person-years in persons with eGFR 90-104ml/min to 30.28/1000 person-years in those with eGFR<30ml/min. After multivariable adjustment, lower eGFR was associated with a higher dementia risk [hazard ratio(HR), 1.71; 95% confidence interval(CI), 1.54-1.91 in eGFR 30-59ml/min and HR 2.62, 1.91-3.58 in eGFR<30ml/min] compared with eGFR of 90-104ml/min. A steeper decline in eGFR (decline>2ml/min/1.73m<sup>2</sup>/year) within one year was associated with higher dementia risk. Risk magnitudes were stronger for vascular dementia than for Alzheimer. As many as 10% (95% CI 6-14%) of dementia cases could be attributed to eGFR<60ml/min/1.73m<sup>2</sup>, a proportion higher than that attributed to other dementia risk factors such as cardiovascular disease and diabetes. </span></p> <p><span><span><b>Conclusions:</b> Both lower kidney function and steeper kidney function decline are associated with the development of dementia. </span></span></p>
Outcomes of Critically Ill Patients Undergoing RRT- a Registry Based Study.
ClinicalTrials.gov study NCT06897254. IPD Sharing: Not stated. Countries: 1. Publications: 2.
Registry-based Study in Patients With Hepatitis D Virus (HDV) Infection in China
ClinicalTrials.gov study NCT05451082. IPD Sharing: YES. Countries: 1. Publications: 2.
Drowning-related OHCA in Denmark: A Six-year Registry-based Study
ClinicalTrials.gov study NCT05323097. IPD Sharing: YES. Countries: 1. Publications: 10.
Natural Cycle, Minimal Stimulation and Conventional IVF: a Registry-based Study
ClinicalTrials.gov study NCT05125497. IPD Sharing: NO. Countries: 1. Publications: 1.
Outcome of Autosomal Dominant Polycystic Kidney Disease Patients on Peritoneal Dialysis: a National Retrospective Study Based on Two French Registries (the French Language Peritoneal Dialysis Registry
ClinicalTrials.gov study NCT03948113. IPD Sharing: UNDECIDED. Countries: 1. Publications: 1.
Cardiovascular Risk Factors and Severe COVID-19. A Nationwide Registry-based Case-Control Study
ClinicalTrials.gov study NCT04426084. IPD Sharing: Not stated. Countries: 1. Publications: 1.
Drowning in Denmark: A Registry-based Study of Fatal and Non-fatal Drowning From 2016 to 2023
ClinicalTrials.gov study NCT05425537. IPD Sharing: Not stated. Countries: 1. Publications: 9.
Implant-based Breast Reconstruction in Post-bariatric Women - a Registry-based National Study
ClinicalTrials.gov study NCT07059104. IPD Sharing: NO. Countries: 1. Publications: 2.
Early PONV - a Registry Based Study in Sweden.
ClinicalTrials.gov study NCT04433676. IPD Sharing: UNDECIDED. Countries: 1. Publications: 1.
GeneMatch: A Program of the Alzheimer's Prevention Registry to Match Individuals to Studies Based on Apolipoprotein E (APOE) Genotype
ClinicalTrials.gov study NCT02564692. IPD Sharing: Not stated. Countries: 1. Publications: 1.
Adult Pulmonary Langerhans Cell Histiocytosis: a National Registry-based Prospective Cohort Study
ClinicalTrials.gov study NCT04665674. IPD Sharing: UNDECIDED. Countries: 1. Publications: 1.
A Registry Based Study Evaluating Overall Survival and Treatment Length in mCRPC Patients Treated With Enzalutamide in Sweden
ClinicalTrials.gov study NCT03328364. IPD Sharing: NO. Countries: 1. Publications: 1.
Kidney function, kidney function decline, and the risk of dementia in older adults: a registry-based study
Open the record for dataset details and reuse information.
A review of response rates over time in registry-based studies using patient-reported outcome measures
<p class="Brdtekst1"><b>Objectives</b>: Gain an overview of expected response rates (RRs) to patient-reported outcome measures (PROMs) in clinical quality registry-based studies and long-term cohorts in order to better evaluate the validity of registries and registry-based studies. Examine the trends of RRs over time and how they vary with study type, questionnaire format, and the use of reminders.</p> <p class="Brdtekst1"><b>Design</b>: Literature review with systematic search.</p> <p class="Brdtekst1"><b>Data</b> <b>sources</b>: PubMed, MEDLINE, EMBASE, kvalitetsregistre.no, kvalitetsregister.se, and sundhed.dk.</p> <p class="Brdtekst1"><b>Eligibility criteria</b>: Articles in all areas of medical research using registry-based data or cohort design with at least two follow-up time-points collecting PROMs and reporting RRs. Annual reports of registries including PROMs that report RRs for at least two time-points.</p> <p class="Brdtekst1"><b>Primary outcome measure</b>: Response rates to PROMs.</p> <p class="Brdtekst1"><b>Results</b>: A total of 10 articles, 12 registry reports, and 6 registry articles were included in the review. The overall RR at baseline was 75% ±22.1 but decreased over time. Cohort studies had a markedly better RR (baseline 97% ±4.7) compared to registry-based data at all time points (baseline 72% ±21.8). For questionnaire formats, paper had the highest RR at 86% ±19.4, a mix of electronic and paper had the second highest at 71% ±15.1, and the electronic-only format had a substantially lower RR at 42% ±8.7. Sending one reminder (82% ±16.5) or more than one reminder (76% ±20.9) to non-responders resulted in a higher RR than sending no reminders (39% ±6.7).</p> <p class="Brdtekst1"><b>Conclusions</b>: The large variation and downward trend of RRs to PROMs in cohort and registry-based studies are of concern and should be assessed and addressed when using registry data in both research and clinical practice.</p>
Data from: Factors related to time of stroke onset versus time of hospital arrival: A SITS registry-based study in an Egyptian Stroke Center
<p><b>Background: </b>high-quality data on time of stroke onset and time of hospital arrival is required for proper evaluation of points of delay that might hinder access to medical care after the onset of stroke symptoms.</p> <p><b>Purpose: </b>Based on (SITS Dataset) in Egyptian stroke patients, we aimed to explore factors related to time of onset versus time of hospital arrival for acute ischemic stroke (AIS).</p> <p><span><b>Material and Methods:</b> We included 1,450 AIS patients from two stroke centers of Ain Shams University, Cairo, Egypt. We divided the day to four quarters and evaluated relationship between different factors and time of stroke onset and time of hospital arrival. The factors included: age, sex, duration from stroke onset to hospital arrival, type of management, type of stroke (TOAST classification), National Institute of Health Stroke Scale (NIHSS) on admission and favorable outcome modified Rankin Scale (mRS ≤2). </span></p> <p><span><b>Results: </b>Pre-hospital: highest stroke incidence was in the first and fourth quarters. There was no significant difference in the mean age, sex, type of stroke in relation to time of onset. NIHSS was significantly less in onset in third quarter of the day. Percentage of patients who received thrombolytic therapy was higher with onset in the first 2 quarters of the day (p=<0.001). In-hospital: there was no difference in percentage of patients who received thrombolytic therapy nor in outcome across 4 quarters of arrival to hospital.</span></p> <p><span><b>Conclusion:</b> pre-hospital factors still need adjustment to improve percentage of thrombolysis, while in-hospital factors showed consistent performance.</span></p>
Supplementary material - Delineating the psychiatric morbidity spectrum in congenital adrenal hyperplasia: a population-based registry study
Open the record for dataset details and reuse information.
A Registry-Based Cohort Study on the Clinical Outcomes of Spinal Cord Glioma Resection Via the Dorsolateral Sulcus Approach
ClinicalTrials.gov study NCT07066475. IPD Sharing: YES. Countries: 1. Publications: 0.
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.