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Dataset results
493 results for “patient‐reported outcomes”
Data from: Self-reported functional status predicts post-operative outcomes in non-cardiac surgery patients with pulmonary hypertension
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Data from: Preoperative falls predict postoperative falls and other adverse patient-reported outcomes
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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>
Study to Evaluate Long-term Effectiveness and Safety, Patient Characteristics and Subjective Patient-reported Outcomes of Dupilumab in Patients With Chronic Obstructive Pulmonary Disease (COPD) Under
ClinicalTrials.gov study NCT07052396. IPD Sharing: YES. Countries: 1. Publications: 0.
A Study of Patient-reported Outcomes in Patients With Lung or Esophageal Cancer
ClinicalTrials.gov study NCT02239328. IPD Sharing: YES. Countries: 1. Publications: 0.
Comparison of Patient-reported Outcomes for Rimegepant and Triptans in the 2023 US National Health and Wellness Survey
ClinicalTrials.gov study NCT06680206. IPD Sharing: NO. Countries: 1. Publications: 0.
Evaluation of Patient Reported Outcomes (PRO) After Total Knee Arthroplasty (TKA) Under Spinal Anesthesia
ClinicalTrials.gov study NCT03053453. IPD Sharing: Not stated. Countries: 1. Publications: 0.
A Non-interventional Study to Describe the Dupilumab Long-term Treatment, Safety and Patient Reported Outcomes in Chronic Nodular Prurigo (Prurigo Nodularis) in Clinical Routine
ClinicalTrials.gov study NCT06087627. IPD Sharing: YES. Countries: 1. Publications: 0.
Patient-Reported Outcomes Following Chemoradiotherapy for Locally Advanced Non-small Cell Lung Cancer
ClinicalTrials.gov study NCT03481114. IPD Sharing: NO. Countries: 1. Publications: 0.
A Study to Assess Treatment Satisfaction, Patient-reported Outcomes, Effectiveness, and Safety of a Fixed-dose Combination of Calcipotriene/Betamethasone Dipropionate PAD Cream in the Treatment of Mil
ClinicalTrials.gov study NCT05811234. IPD Sharing: NO. Countries: 3. Publications: 0.
Patient-reported Outcomes for Sarecycline Effectiveness and Safety (PROSES)
ClinicalTrials.gov study NCT04820673. IPD Sharing: NO. Countries: 1. Publications: 0.
Evaluation of Patient Reported Outcomes in RRMS Patients Candidates for MS Therapy Change and Transitioned to Fingolimod 0.5 mg (EPOC)
ClinicalTrials.gov study NCT01534182. IPD Sharing: Not stated. Countries: 1. Publications: 0.
Assessment of Esthetics and Patient-reported Outcomes of Single Implant Crowns
ClinicalTrials.gov study NCT03960281. IPD Sharing: NO. Countries: 0. Publications: 6.
PORTAL: Patient-reported Outcomes After Routine Treatment of Atypical Lesions
ClinicalTrials.gov study NCT03070236. IPD Sharing: NO. Countries: 1. Publications: 0.
Study of the Effectiveness of Valbenazine on Patient- and Clinician-Reported Outcomes in Participants With Tardive Dyskinesia
ClinicalTrials.gov study NCT05859698. IPD Sharing: NO. Countries: 1. Publications: 0.
Association Between Exercise, Patient-Reported Outcomes, and Clinical Events in Adult Cancer Survivors
ClinicalTrials.gov study NCT07030686. IPD Sharing: YES. Countries: 1. Publications: 0.
Electronic Patient-reported Outcomes (e-PROs) in Early Intervention
ClinicalTrials.gov study NCT03904797. IPD Sharing: YES. Countries: 0. Publications: 2.
Generate Real World Data On Tofacitinib Induction Therapy and Changes In Clinical and Patient Reported Outcomes.
ClinicalTrials.gov study NCT05069259. IPD Sharing: YES. Countries: 1. Publications: 0.
Long-term Real-world Study of Dupilumab in COPD : Patient Characteristics, Safety and Patient-reported Outcomes
ClinicalTrials.gov study NCT07380711. 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.