Back to search

Article

Implementing Electronic Informed Consent in Rare Disease Genomics

2025-11-06

Abstract excerpt

<title>Abstract</title> <p>Background In rare disease research, sharing of individual health data is essential for advancing diagnostics and therapies, requiring robust and ethically sound informed consent processes. Methods Within the Genomic Medicine Sweden Rare Diseases (GMS-RD) multicenter study, an electronic informed consent (eConsent) platform was developed to support data sharing, facilitate participation...

Topics

Open a Topic to create a Post that cites this publication.

Identifiers and source

Literature Corpus work
79f4ac24-65be-53aa-930b-c04735c6567a
DOI
10.21203/rs.3.rs-7906738/v1
Open publication

Related research

Semantic proximity does not establish scientific evidence.

Click a neighbor to travelStep 1 · 12 closest
Interactive article relationship graphSelect a related publication card to move it into the centre and load its closest explainable connections. Solid lines are source-backed structured connections. Dashed lines are semantic discovery signals and are not scientific evidence.
Implementing Electronic Informed Consent in Rare Disease GenomicsDOI 10.21203/rs.3.rs-7906738/v1
Development and validation of a stakeholder-driven, self-contained electronic informed consent platform for trio-based genomic research studiesSemantic proximity
An evaluation of the implementation, adoption, and uptake of a model of remote e-consent within the PRE-DX studySemantic proximity
La importancia crítica del consentimiento informado en la práctica médica y la investigación biomédica contemporáneaSemantic proximity
What does a consent conversation for whole genome sequencing look like in the NHS Genomic Medicine Service? An observational studySemantic proximity
A Closer Look at the Recommended Criteria for Disclosing Genetic Results: Perspectives of Medical Genetic Specialists, Genomic Researchers, and Institutional Review Board ChairsSemantic proximity
Informed Consent in the Genomics EraSemantic proximity
Informed Consent in Genomic Testing: Healthcare Professionals’ Perceptions on the Value of a Dynamic Consent Platform in Precision OncologySemantic proximity
Variation among Consent Forms for Clinical Whole Exome SequencingSemantic proximity
Evaluation of CTRL: a web application for dynamic consent and engagement with individuals involved in a cardiovascular genetic disorders cohortSemantic proximity
Informed consent for exome sequencing research in families with genetic disease: The emerging issue of incidental findingsSemantic proximity
Consent and confidentiality in clinical genetic practice: guidance on genetic testing and sharing genetic informationSemantic proximity
Return of results from genomic research: a practical toolSemantic proximity
Select a neighboring publication to make it the new centre.