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216 results for “consent”
SMA-TB Clinical trial: video & electronic informed consent
<p>The first SMA-TB video has been produced aiming a better understanding of SMA-TB Randomized Clinical Trial (RCT) objectives and procedures. This RCT is work package 1 of SMA-TB project. It is entitled <em>"Phase 2b Randomized double-blind, placebo controlled trial to estimate the potential efficacy and safety of two repurposed drugs, acetylsalicylic acid and ibuprofen, for use as adjunct therapy added to, and compared with, the standard WHO recommended TB regimen (SMA-TB)”, </em>and is registered in ClinicalTrials.gov data under identifier NCT04575519</p> <p>This video has been conceptualized as an e-informed consent for TB patients aiming their participation in SMA-TB CTs in Georgia and South Africa, as well as for anyone wanting to learn about the SMA-TB CT. The video explains in a very comprehensive way the rationale of SMA-TB concept, how the CT will be performed, what is expected from the patient, which are potential benefits, as well as side effects. The message is produced both in English and in Georgian.</p>
Webinar- Rethinking informed consent
<p>Recordings on the <a href="https://i-consentproject.eu/experts-views-on-digitalisation-and-policy-developments-of-clinical-research/">online workshop</a> organized by AND-CG and held on 26 March 2020.</p> <p>The workshop counted with the participation of seven experts (four external and three members of the i-CONSENT consotium) who conducted <a href="https://i-consentproject.eu/i-consent-virtual-workshop-rethinking-informed-consent-emerging-challenges-in-the-digital-era/">presentations on the impact of technology and digitalisation</a> on IC processes in clinical trials.</p>
Questionnaire on gender and age-related peculiarities in informed consent to clinical trials – National legislation
<p>European experts from the six selected countries (Germany, Spain, Austria, France, Italy, and United Kingdom) included in research done within task 1.3 (Ethical and legal review of gender and age-related issues associated with the acquisition of informed consent) participated in a survey on gender and age-related peculiarities in informed consent to clinical trials within national legislations.</p> <p>Experts were selected for their high-level scientific expertise in the fields relevant to the objectives of task 1.3. A short questionnaire on “Gender and age-related peculiarities in informed consent to clinical trials within national legislations" has been prepared and circulated to contact experts. This questionnaire was meant to identify the legal review process and collect up-to-date data. It was structured in 10 queries, exclusively aimed at obtaining hard law and soft law information pertaining to the topics addressed in task 1.3.</p>
Patient Representatives' Perspective on Informed Consent: Nominal Group Data
<p>For Task 1.6 of the i-CONSENT project, a one day workshop was organised with nine attendees from eight European patient groups. During the workshop, Nominal Group Technique (NGT) was used to explore issues that were considered pertinent within each of the four themes (comprehension, patient expectations, gender and assent), and to reach a consensus in terms of their significance. During this exercise, the workshop facilitator presented a short introduction to the theme, before each participant was given sticky notes and instructed to write down as many individual issues as possible using a separate sticky note for each idea. There was no limit to the number of ideas the participants could generate. This stage was conducted in silence and repeated for each of the four themes. The attached documents include the list of all the ideas collected on sticky notes notes during this stage and the ranking of the items done by the participants.</p>
SURVEY ON INFORMED CONSENT (IC) MANAGEMENT DURING THE PANDEMIC
<p>Data obtained through a survey with representatives of different Spanish biobanks about the adaptations done by some of the biobanks of the Spanish Biobank Network to manage the Informed Consent process during the COVID-19 pandemic</p>
Worskshop: a Neurobioethical Perspective on Informed Consent (4 videos)
<p>UNESCO Chair presents is first one-day workshop: <em><strong>A Neurobioethical Perspective on Informed Consent </strong></em>within the <a href="http://i-consentproject.eu/">i-Consent</a> project which works on improving guidelines for Informed Consent, including vulnerable populations, under a gender perspective.</p> <p>During the workshop ten experts on the field will discuss:</p> <p>1. What would be the consequences of reaching an identification of the neural correlates of the ordinary decision-making process behind the notion of informed consent?</p> <p>2. Cognitive and other enhancers might paradoxically create new groups of vulnerable populations (i.e. soldiers): what are the implications of this awareness in relation to informed consent?</p> <p>3. Cultural biases have been proven to exist also at a neuronal level, in which way should we filter such an information in relation to informed consent?</p>
Lack of funds for consent document translation impedes inclusive enrollment
<p>Data on all consent events for patients who participated in clinical trials at UCLA from January 2013 to December 2018.</p>
The role of health sciences libraries in supporting medical image consent standards survey documentation
<p><strong><em>Objective</em>:</strong> To determine if health sciences library workers were familiar with best practices regarding informed consent for the publication of medical images and if they incorporate the recommendations into their professional work.<br><br><strong><em>Methods</em>: </strong>A survey was developed by the authors and distributed to library listservs in the United States. The results of the survey were tabulated in R.<br><br><strong><em>Results</em>: </strong>A total of 90 respondents were included in the data analysis with all respondents reporting multiple responsibilities in their professional role. While the majority of library workers (59%) were familiar with the best practices, few incorporated the recommendations into their everyday professional work.<br><br><strong><em>Conclusions</em>:</strong> The professional work of health sciences library workers does not appear to include a significant inclusion of the best practices for the informed consent for the publication of medical images. There is a need for future research to better understand how library workers can better incorporate their knowledge of medical image publication consent standards into their work.</p>
Privacy-Enhancing Technology and Everyday Augmented Reality: Understanding Bystanders' Varying Needs for Awareness and Consent
<p>This data is for our ACM IMWUT 2022 paper "Privacy-Enhancing Technology and Everyday Augmented Reality: Understanding Bystanders' Varying Needs for Awareness and Consent". See the README for more details.</p>
SPIRIT Checklist & Model Consent for 'Predicting Acute and Post-Recovery Outcomes in Cerebral Malaria and Other Comas by Optical Coherence Tomography (OCT in CM) – A protocol for an observational cohort study of Malawian children'
<p>This dataset contains the SPIRIT checklist (adapted to a observational trial) and model consent forms for the OCT in CM study protocol. The protocol will be submitted as a paper to Wellcome Open Research.</p>
AI-Enhanced Consent for Cataract Surgery
ClinicalTrials.gov study NCT06528509. IPD Sharing: NO. Countries: 1. Publications: 10.
A Randomized Trial of the Early Referral and Request Approach (ERRA) Intervention to Increase Consent to Organ Donation
ClinicalTrials.gov study NCT02138227. IPD Sharing: Not stated. Countries: 1. Publications: 2.
Community Solutions to Adolescent Research Consent - Minor Consent for Biomedical HIV Research
ClinicalTrials.gov study NCT05371327. IPD Sharing: YES. Countries: 1. Publications: 2.
Improving Informed Consent for Palliative Chemotherapy
ClinicalTrials.gov study NCT02282722. IPD Sharing: YES. Countries: 1. Publications: 6.
App-based Consent for Pediatric Clinical Research
ClinicalTrials.gov study NCT05880147. IPD Sharing: YES. Countries: 1. Publications: 7.
An Integrated Consent Model Study to Compare Two Standard of Care Schedules for Monitoring Cardiac Function in Patients Receiving Trastuzumab for Early Stage Breast Cancer
ClinicalTrials.gov study NCT02696707. IPD Sharing: NO. Countries: 1. Publications: 1.
Improving Informed Consent in Pediatric Endoscopy
ClinicalTrials.gov study NCT00899392. IPD Sharing: Not stated. Countries: 1. Publications: 5.
Assessing Patient Satisfaction and Confidence After Use of Educational Video to Augment Surgical Consent for Thyroid Surgery
ClinicalTrials.gov study NCT06918223. IPD Sharing: YES. Countries: 1. Publications: 16.
Enhancing Consent for Alzheimer's Research
ClinicalTrials.gov study NCT00453544. IPD Sharing: Not stated. Countries: 1. Publications: 6.
Easy-to-Read Informed Consent (ETRIC) for Hematopoietic Cell Transplantation Clinical Trials (BMT CTN 1205)
ClinicalTrials.gov study NCT02081248. IPD Sharing: YES. Countries: 1. Publications: 1.
ScienceDex guides
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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.