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.
116
datasets available to search
ShareScore release 0.9.0
Dataset results
116 results for “Informal care”
Minimal data set for "Cohort profile: The ENTWINE iCohort Study, a multinational longitudinal web-based study of informal care"
<p><strong>Title:</strong></p> <p>Minimal Data Set for the Reproduction of Findings in "Elayan et al., Cohort Profile: The ENTWINE iCohort Study, a Multinational Longitudinal Web-Based Study of Informal Care".</p> <p> </p> <p><strong>Study Summary:</strong></p> <p>The data sets provided herein are derived from the ENTWINE iCohort Study, a multinational web-based cohort study employing an intensive longitudinal design. The study integrates a two-wave panel survey (baseline and 6-month follow-up) with optional weekly diary assessments. The cohort comprises caregivers and care recipients from nine countries: the United Kingdom, the Netherlands, Italy, Sweden, Israel, Germany, Greece, Poland, and Ireland. The study aimed to examine the influence of personal, psychological, social, economic, and geographic factors on caregiving experiences.</p> <p>Participants were eligible if they met the following criteria: 1) residency in a participating country; 2) capability to respond to surveys in English, Swedish, German, Dutch, Italian, Greek, Hebrew, or Polish; 3) access to the internet and ability to use it; 4) at least 18 years of age; 5) self-declared cognitive and physical capacity to complete the surveys; 6) either providing care to an adult (aged ≥ 18 years) with a chronic health condition, disability, or other care need, or receiving care from an adult due to similar conditions.</p> <p>The detailed methodology and results of the study can be found in the associated manuscript. For the complete survey questionnaires, please refer to: Morrison V, Zarzycki M, Vilchinsky N, Sanderman R, Lamura G, Fisher O, et al. A Multinational Longitudinal Study Incorporating Intensive Methods to Examine Caregiver Experiences in the Context of Chronic Health Conditions: Protocol of the ENTWINE-iCohort. Int J Environ Res Public Health. 2022;19. doi: <a href="https://doi.org/10.3390/ijerph19020821">10.3390/ijerph19020821</a></p> <p> </p> <p><strong>Data files:</strong></p> <p>The repository contains the following data files:</p> <ol> <li>"cg_minimal_dataset" (available in dta, sav, rds, and xlsx formats): This is a minimal data set containing de-identified and processed data derived from the ENTWINE iCohort Caregiver Baseline Survey. The variables present in this data set are detailed in the associated codebook, "cg_minimal_dataset_codebook".</li> <li>"cr_minimal_dataset" (available in dta, sav, rds, and xlsx formats): This is a minimal data set containing de-identified and processed data derived from the ENTWINE iCohort Care Recipient Baseline Survey. The variables present in this data set are detailed in the associated codebook, "cr_minimal_dataset_codebook".</li> </ol>
Can we collect health-related quality of life information from anticoagulated atrial fibrillation participants who have recently experienced a bleed? An observational feasibility study in primary, and secondary care and through an online forum
<p>The purpose of the study was to evaluate the feasibility of recruiting participants diagnosed with atrial fibrillation (AF) taking oral anticoagulation therapies (OACs) and recently experiencing a bleed to collect health-related quality of life (HRQoL) information.</p> <p><strong>Design</strong></p> <p>Observational feasibility study. The study aimed to determine the feasibility of recruiting participants with minor and major bleeds, the most appropriate route for recruitment and the appropriateness of the Patient Reported Outcome Measures (PROMs) selected for collecting HRQoL information in AF patients, and the preferred format of the surveys.</p> <p><strong>Setting</strong></p> <p>Primary care, secondary care, and via an online patient forum.</p> <p><strong>Participants</strong></p> <p>The study population was adult patients (≥ 18) with Atrial Fibrillation (AF) taking oral anticoagulation therapies (OATs) who had experienced a recent major or minor bleed within the last four weeks.</p> <p><strong>Primary and Secondary outcome measures</strong></p> <p>Primary outcome:</p> <p>Patient reported outcome measures (PROMs): EuroQol 5 dimensions-5 levels (EQ-5D-5L); Perception of anticoagulant treatment questionnaire, part 2 only (PACT-Q, part 2); Atrial fibrillation effect on quality of life (AFEQT)</p> <p>Secondary outcomes:</p> <p>Location of bleed; bleed severity; current treatment; patient perceptions of HRQoLin relation to bleeding events.</p> <p><strong>Results</strong></p> <p>We received initial expressions of interest from 103 participants. We subsequently recruited 32 participants to the study- 14 from primary care and 18 through the AF forum. No participants were recruited through secondary care. Despite 32 participants consenting, only 26 initial surveys were completed. We received follow-up surveys from 11 participants (8 primary care and 3 AF forum). COVID-19 had a major impact on the study. </p> <p><strong>Conclusions</strong></p> <p>Primary care was the most successful route for recruitment. Most participants recruited to the study experienced a minor bleed. Further ways to recruit in secondary care should be explored, especially to capture more serious bleeds. </p> <p><strong>Registration</strong></p> <p>The study was adopted onto the NIHR Portfolio (I.D. #47771) and registered with www.ClinicalTrials.gov (#NCT04921176) in February 2021.</p> <p>Dataset contains all anonymised data for the participants who completed the survey including demographics, details of bleeds, co-morbidities and completed patient reported outcomes</p>
Telemedicine Control Tower for the Operating Room: Navigating Information, Care and Safety
ClinicalTrials.gov study NCT03923699. IPD Sharing: NO. Countries: 1. Publications: 4.
Supporting information for: The Time Requirements for Primary Care Consultations: Initial Sick Child Visits in Low- and Middle-income Countries Using the Integrated Management of Childhood Illness (IMCI) Clinical Algorithm
<p>Few studies have examined the time required for primary care consultations; none have focused on sick child visits in low- and middle-income countries (LMICs). This project begins to fill that gap by providing evidence-based estimates of the time needed for initial visits with under-five infants and children at public or not-for-profit facilities in countries using the Integrated Management of Childhood Illness (IMCI) clinical algorithm.</p> <p>Estimates of the mean expected duration of IMCI consultations require (a) classification profiles, i.e., tabulations of the gold standard health issues presented by patients less than 5 years old; (b) lists of the tasks included in applicable versions of the IMCI algorithm and the conditions that elicit them, and (c) an estimate of the time needed to perform tasks with no pre-defined minimum duration. The latter requires, in addition to classification profiles, information on rates of task performance and the mean observed duration of consultations.</p> <p>The IMCI clinical algorithm and the research surrounding it provide unusually rich sources of such information. Developed in the mid 1990s by the World Health Organization and the United Nations Children’s Fund, the IMCI algorithm seeks to reduce child mortality in LMICs by improving the technical quality of primary care services. For infants less than 2 months old, the algorithm focuses on bacterial infections, feeding problems, low weight, and, in some versions, jaundice. For children 2-59 months old, the foci include acute respiratory infections, especially pneumonia; diarrhea; fevers, especially malaria and measles; malnutrition, and anemia. Immunization status is a concern for both age groups. The algorithm provides a scheme to classify the health issues with which infants and children present, an array of tasks providers may be expected perform, and criteria by which tasks are elicited. Research on the design and utility of the algorithm, its effects on provider performance, and related topics furnishes data on the prevalence of gold standard IMCI classifications in a variety of patient populations. In some cases, it also enables one to calculate the time required to perform tasks.</p> <p>I found such information by searching MEDLINE, the database of the International Network for Rational Use of Medicines, the websites of the WHO and its regional offices, GOOGLE, and GOOGLE SCHOLAR using search terms such as ‘Integrated Management of Childhood Illness’, ‘observational’, ‘prospective’, ‘classification’, ‘clinical signs’, ‘health facility survey’, and ‘validity’. I also reviewed studies that cited a qualified study and, conversely, material included in the bibliographies of qualified studies.</p> <p>The supplemental information files contain the following:</p> <p>WORKBOOK S1_STUDIES USED</p> <p>Lists features of, and sources for, the studies used to construct classification profiles and to estimate the time required to perform the average task with no predefined minimum duration. With 2 exceptions (see below, DATA S1 and DATA S2), all the studies have been published or are readily available on the internet. None of the data can be used to identify individuals.</p> <p>DATA S1_REPORT OF THE HEALTH FACILITY SURVEY IN BOTSWANA, 2007-08 and DATA S2_REPORT OF THE HEALTH FACILITY SURVEY IN TANZANIA, 2003</p> <p>PDF files of Health Facility Survey reports that were found on the internet but have since been taken down.</p> <p>DATA S3_BURKINA FASO CHART BOOKLET, 2015</p> <p>PDF provided <span>Drs. Sophie Sarrassat (London School of Hygiene and Tropical Medicine) and Serge M. A. Somda (Université Nazi BONI).</span></p> <p>WORKBOOK S2_CLASSIFICATION PROFILES: INFANTS; WORKBOOK S3_CLASSIFICATION PROFILES: CHILDREN IN UPPER MIDDLE-INCOME COUNTRIES; WORKBOOK S4_CLASSIFICATION PROFILES: CHILDREN IN LOWER MIDDLE-INCOME COUNTRIES (I); WORKBOOK S5_CLASSIFICATION PROFILES: CHILDREN IN LOWER MIDDLE-INCOME COUNTRIES (II), and WORKBOOK S6_CLASSIFICATION PROFILES: CHILDREN IN LOW INCOME COUNTRIES </p> <p>The design of the worksheets in these workbooks is described in TEXT S1_NOTES OF THE CONSTRUCTION OF CLASSIFICATION PROFILES (see below).</p> <p>WORKBOOK S7_IMCI CLINICAL TASKS</p> <p>Lists the clinical tasks provided by relevant IMCI algorithms for the care of infants and children. Consists of 6 worksheets covering mandatory tasks, conditional assessments, and treatment and counseling tasks for infants and children.</p> <p>WORKBOOK S8_MINUTES PER TASK WITH NO MINIMUM DURATION</p> <p>Provides estimate of the mean time required to perform a task with no minimum duration for each of 7 populations for which the required data are available, corrected, where necessary, for the effect of an observer on the rate and pace of task performance. Also provides a geometric mean for all 7 populations.</p> <p>TEXT S1_NOTES ON METHODOLOGY</p> <p>WORD document describing the steps involved in estimating the expected durations of consultations.</p> <p>TEXT S2_NOTES OF THE CONSTRUCTION OF CLASSIFICATION PROFILES</p> <p>WORD document describing the steps involved in constructing each profile, problems encountered, and how they were solved.</p> <p>TEXT S3_NOTES ON THE IDENTIFICATION OF IMCI CLINICAL TASKS</p> <p>WORD document describing the standards used in identifying clinical tasks in IMCI algorithms.</p> <p>TEXT S4_NOTES ON THE ESTIMATION OF MINUTES PER TASK WITH NO MINIMUM DURATION</p> <p>WORD document describing the steps involved in estimating the mean time required to perform a task with no predefined minimum duration, problems encountered, and how they were solved.</p>
"Effect of LEGO® Serious Play® Trauma-Informed Care Training on Nursing Students
ClinicalTrials.gov study NCT07304609. IPD Sharing: NO. Countries: 1. Publications: 18.
Communicating Health Information and Improving Coordination With Primary Care
ClinicalTrials.gov study NCT03104543. IPD Sharing: YES. Countries: 1. Publications: 2.
Advance Care Planning: Communicating With Outpatients for Vital Informed Decision
ClinicalTrials.gov study NCT04660422. IPD Sharing: YES. Countries: 1. Publications: 2.
Discharge Information and Support for Patients Receiving Outpatient Care in the Emergency Department
ClinicalTrials.gov study NCT01717976. IPD Sharing: NO. Countries: 1. Publications: 4.
A Co-created Self-care and Informal Support Intervention Study Among Women With GDM in Vietnam
ClinicalTrials.gov study NCT05744856. IPD Sharing: YES. Countries: 1. Publications: 1.
Point-of-care Health Literacy and Activation Information to Improve Diabetes Care
ClinicalTrials.gov study NCT01876485. IPD Sharing: NO. Countries: 1. Publications: 4.
Data-informed Stepped Care (DiSC) to Improve Adolescent HIV Outcomes (UH3)
ClinicalTrials.gov study NCT05007717. IPD Sharing: YES. Countries: 1. Publications: 2.
Engaging Informal Health Care Providers on Case Detection and Treatment Initiation Rates for TB and HIV in Rural Malawi (Triage Plus)
ClinicalTrials.gov study NCT02127983. IPD Sharing: Not stated. Countries: 1. Publications: 1.
Making Informed Choices on Incorporating Chemoprevention Into Care (MiCHOICE)
ClinicalTrials.gov study NCT04496739. IPD Sharing: Not stated. Countries: 2. Publications: 3.
Improving Pediatric Safety and Quality With Health Care Information Technology
ClinicalTrials.gov study NCT00134823. IPD Sharing: Not stated. Countries: 1. Publications: 2.
Improving Shared-Decision Making in the Intensive Care Unit Using Patient-reported Outcome Information
ClinicalTrials.gov study NCT05155150. IPD Sharing: NO. Countries: 1. Publications: 1.
Development of an Information Board and Mobile Application for the Care of Type 2 Diabetes
ClinicalTrials.gov study NCT04974333. IPD Sharing: NO. Countries: 1. Publications: 1.
Integration of Health Information Technology and Promotion of Personhood in Family-Centered Dementia Care
ClinicalTrials.gov study NCT04571502. IPD Sharing: NO. Countries: 1. Publications: 12.
Effectiveness of Information Technology-Assisted Horticultural Therapy Program on Heart Rate Variability, Stress, Depression and Happiness Among Older Adults Resident in Long-Term Care Facilities
ClinicalTrials.gov study NCT06797804. IPD Sharing: NO. Countries: 1. Publications: 25.
Eliciting Informed Goals of Care in Elderly Patients
ClinicalTrials.gov study NCT06002113. IPD Sharing: NO. Countries: 1. Publications: 1.
Structured Information During the Intensive Care Unit Stay
ClinicalTrials.gov study NCT00764933. IPD Sharing: Not stated. Countries: 1. Publications: 2.
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.