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152
datasets available to search
ShareScore release 0.9.0
Dataset results
152 results for “Rare Diseases”
Dual Guidance Structure for Evaluation of Patients With Unclear Diagnosis in Centers for Rare Diseases
ClinicalTrials.gov study NCT03563677. IPD Sharing: UNDECIDED. Countries: 1. Publications: 4.
Education & Care in RARE: Efficacy of Targeted Psychoeducational Intervention Among Pediatric Rare Disease Patients
ClinicalTrials.gov study NCT06729554. IPD Sharing: NO. Countries: 1. Publications: 23.
Gait in Rare Diseases
ClinicalTrials.gov study NCT05161494. IPD Sharing: UNDECIDED. Countries: 1. Publications: 11.
Orodental Manifestations of Rare Diseases
ClinicalTrials.gov study NCT02397824. IPD Sharing: Not stated. Countries: 1. Publications: 11.
Oral Health Related Quality of Life of Patients With Rare Diseases: a Qualitative Approach
ClinicalTrials.gov study NCT05070988. IPD Sharing: NO. Countries: 1. Publications: 1.
Characterization and Contribution of Genome-wide DNA Methylation (DNA Methylation Episignatures) in Rare Diseases With Prenatal Onset
ClinicalTrials.gov study NCT06475651. IPD Sharing: NO. Countries: 1. Publications: 2.
Palliative Care Coaching for Families With Rare Advanced Lung Diseases
ClinicalTrials.gov study NCT03813667. IPD Sharing: NO. Countries: 1. Publications: 1.
Genetic Newborn Screening for Rare Diseases Within the Screen4Care Project
ClinicalTrials.gov study NCT06549218. IPD Sharing: NO. Countries: 3. Publications: 0.
Natural History, Pathogenesis and Outcome of Melorheostosis A Rare Osteosclerotic Disease
ClinicalTrials.gov study NCT02504879. IPD Sharing: UNDECIDED. Countries: 1. Publications: 5.
Children Affected by Rare Disease and Their Families Network
ClinicalTrials.gov study NCT04339465. IPD Sharing: UNDECIDED. Countries: 1. Publications: 2.
Mapping of the dataset of the German National Regsitry for Rare Diseases (NARSE) to Observational Medical Outcomes Partnership Common Data Model (OMOP CDM)
<p>Mapping between the data set of the German National Registry for Rare Diseases ("Nationales Register für Seltene Erkrankungen"; <a href="https://www.narse.de/">NARSE</a>) to Observational Medical Outcomes Partnership Common Data Model (OMOP CDM) using international standards.</p>
Sick of ticks? Towards a comprehensive understanding of rarely diagnosed Ixodes ricinus-borne diseases - Supplementary data
<p>All supplementary data for the various chapters of this thesis can be found in the online publications or in the files below.</p>
Phase II Study of Imatinib Mesylate in Patients With Life Threatening Malignant Rare Diseases
ClinicalTrials.gov study NCT00154388. IPD Sharing: Not stated. Countries: 0. Publications: 1.
A Study Comparing Different Treatment Approaches for the Initiation of Puberty in Girls With Turner Syndrome Using a TRIFECTA-DARED Approach for Rare Diseases
ClinicalTrials.gov study NCT07041814. IPD Sharing: YES. Countries: 1. Publications: 0.
An Open-label Extended Clinical Protocol of Ranibizumab to Evaluate Safety and Efficacy in Rare VEGF Driven Ocular Diseases.
ClinicalTrials.gov study NCT01908816. IPD Sharing: Not stated. Countries: 1. Publications: 0.
Implementing Dynamic Consent for Rare Disease Patients
ClinicalTrials.gov study NCT06656247. IPD Sharing: NO. Countries: 0. Publications: 5.
A Study to Test the Safety of Pozelimab in Pediatric Participants 1 to 5 Years of Age With a Rare Disease Called CHAPLE (Complement Hyperactivation, Angiopathic Thrombosis, Protein-losing Enteropathy)
ClinicalTrials.gov study NCT07142343. IPD Sharing: YES. Countries: 1. Publications: 0.
Implementation and Evaluation of a Rare Disease Algorithm to Identify Persons at Risk of Gaucher Disease Using Data From Electronic Health Records (EHRs) in the United States (Project Searchlight)
ClinicalTrials.gov study NCT05908656. IPD Sharing: YES. Countries: 1. Publications: 0.
CZI Rare As One: Co-designing an App and Wearable Based Compass for Rare Diseases
ClinicalTrials.gov study NCT06907953. IPD Sharing: YES. Countries: 1. Publications: 0.
A Phase 2 Trial of the Safety and Efficacy of Bardoxolone Methyl in Patients With Rare Chronic Kidney Diseases - PHOENIX
ClinicalTrials.gov study NCT03366337. 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.