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42
datasets available to search
ShareScore release 0.9.0
Dataset results
42 results for “Patient-Reported Outcome Measures”
Patient-Reported Outcomes Measurement Information System Integration Into Rheumatology Clinical Practice
ClinicalTrials.gov study NCT05026853. IPD Sharing: NO. Countries: 1. Publications: 1.
Validation of Patient-reported Outcomes Measures for the Assessment of Gastroesophageal Reflux Disease (GERD) Symptoms
ClinicalTrials.gov study NCT00703534. IPD Sharing: Not stated. Countries: 1. Publications: 3.
Patient-Reported Outcome Measurement in Heart Failure Clinic
ClinicalTrials.gov study NCT04164004. IPD Sharing: NO. Countries: 1. Publications: 3.
Evaluating the Use of Patient-Reported Outcome Measures for Improving the Inter-Rater Reliability of Common Terminology Criteria for Adverse Event Ratings
ClinicalTrials.gov study NCT04066868. IPD Sharing: Not stated. Countries: 1. Publications: 2.
Patient-Reported Outcome Measures in Lower Extremity Rehabilitation Program PROM_R: Impact on Health Care
ClinicalTrials.gov study NCT06206018. IPD Sharing: NO. Countries: 1. Publications: 5.
The Diabetes Patient-Reported Outcome Measures Trial
ClinicalTrials.gov study NCT03471104. IPD Sharing: NO. Countries: 1. Publications: 3.
Piloting a Patient-Reported Outcome Measure for Opioid Use Disorder Recovery in a Clinical Setting
ClinicalTrials.gov study NCT05388045. IPD Sharing: NO. Countries: 1. Publications: 1.
Developing a Patient-Reported Outcome (PRO) Screening Measure for Infections and Measuring Quality of Life in Hematological Patients With Secondary Immunodeficiency (SID) Across the Treatment Trajecto
ClinicalTrials.gov study NCT06821880. IPD Sharing: YES. Countries: 2. Publications: 0.
Patient-reported Outcome Measures After Post-anesthesia Care Unit Delirium
ClinicalTrials.gov study NCT04168268. IPD Sharing: NO. Countries: 1. Publications: 1.
Development of a Patient-Reported Outcome Measure to Assess Recovery After Abdominal Surgery
ClinicalTrials.gov study NCT03461497. IPD Sharing: UNDECIDED. Countries: 5. Publications: 4.
Follow-up Using Patient-Reported Outcome (PRO) Measures in Patients With Chronic Kidney Disease
ClinicalTrials.gov study NCT03847766. IPD Sharing: NO. Countries: 1. Publications: 3.
The Mere-measurement Effect of Patient-reported Outcomes
ClinicalTrials.gov study NCT06443073. IPD Sharing: Not stated. Countries: 1. Publications: 7.
Routine Electronic Patient-reported Outcome Measures During and After Radiotherapy: A Randomized Controlled Study
ClinicalTrials.gov study NCT06598293. IPD Sharing: NO. Countries: 1. Publications: 3.
Evaluation of Routinely Measured Patient-reported Outcomes in Hemodialysis Care
ClinicalTrials.gov study NCT03535922. IPD Sharing: NO. Countries: 1. Publications: 11.
Patient-reported Outcome Measures Comparing Static Computer-aided Implant Surgery and Conventional Implant Surgery
ClinicalTrials.gov study NCT04950491. IPD Sharing: NO. Countries: 1. Publications: 27.
Evaluation of an ICU-specific Questionnaire for Patient-reported Outcome Measures
ClinicalTrials.gov study NCT02767180. IPD Sharing: UNDECIDED. Countries: 1. Publications: 4.
Correlation Between Intraoperative Tourniquet Use and Limb pH, Functional Measures and Patient-reported Outcomes After Ankle Fracture Surgery
ClinicalTrials.gov study NCT05445960. IPD Sharing: NO. Countries: 1. Publications: 5.
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>
Development and Validation of a Patient-Reported Outcome Measure for Hereditary Spastic Paraplegia
<p>This dataset is related to HSP-SNAP test retest in patients with Hereditary Spastic paraplegia (HSP). It also contains HSP-SNAP as assesssed by age-matched healthy subjects. </p> <p>Gender, age are reported for both groups. </p> <p>Age at onset, SPRS, 6 minute walking test and SF-36 are also reported for patients with HSP.</p> <p> </p> <p>please cite the following work if you use this dataset:</p> <p>Diella E, D'Angelo MG, Stefan C, Girardi G, Morganti R, Martinuzzi A, Biffi E. Validation of the Italian version of a patient-reported outcome measure for Hereditary Spastic Paraplegia. PLoS One. 2024 Apr 1;19(4):e0301452. doi: 10.1371/journal.pone.0301452. PMID: 38557877; PMCID: PMC10984402.</p>
Development of a Patient-reported Outcome Measure for Women With Chronic Pelvic Pain
ClinicalTrials.gov study NCT06083597. 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
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DANDI Archive for NWB datasets
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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.