ArticleEuropean journal of human genetics : EJHG2016
Registered access: a 'Triple-A' approach.
Article in European journal of human genetics : EJHG, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
22 citing papers in PubMed.
- Data access arrangements in genomic research consortia.Scientific reports · 2024Review
- Future-proofing genomic data and consent management: a comprehensive review of technology innovations.GigaScience · 2024Review
- Consent Codes: Maintaining Consent in an Ever-expanding Open Science Ecosystem.Neuroinformatics · 2023Article
- Genomics4RD: An integrated platform to share Canadian deep-phenotype and multiomic data for international rare disease gene discovery.Human mutation · 2022Article
- The C-BIG Repository: an Institution-Level Open Science Platform.Neuroinformatics · 2022Article
- GA4GH Passport standard for digital identity and access permissions.Cell genomics · 2021Article
- CanDIG: Federated network across Canada for multi-omic and health data discovery and analysis.Cell genomics · 2021Article
- An agenda-setting paper on data sharing platforms: euCanSHare workshop.Open research Europe · 2021Article
- Implementing the FAIR Data Principles in precision oncology: review of supporting initiatives.Briefings in bioinformatics · 2020Review
- The Data Tags Suite (DATS) model for discovering data access and use requirements.GigaScience · 2020Article
- Cloud bursting galaxy: federated identity and access management.Bioinformatics (Oxford, England) · 2020Article
- Variant data sharing by clinical laboratories through public databases: consent, privacy and further contact for research policies.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- Federated discovery and sharing of genomic data using Beacons.Nature biotechnology · 2019Article
- Genomic Data-Sharing Practices.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019Article
- Registered access: authorizing data access.European journal of human genetics : EJHG · 2018Article
- Personal Genome Project UK (PGP-UK): a research and citizen science hybrid project in support of personalized medicine.BMC medical genomics · 2018Article
- Meeting Patients' Right to the Correct Diagnosis: Ongoing International Initiatives on Undiagnosed Rare Diseases and Ethical and Social Issues.International journal of environmental research and public health · 2018Review
- Better governance, better access: practising responsible data sharing in the METADAC governance infrastructure.Human genomics · 2018Article
- Simplifying research access to genomics and health data with Library Cards.Scientific data · 2018Article
- Common ELIXIR Service for Researcher Authentication and Authorisation.F1000Research · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
We propose a standard model for a novel data access tier - registered access - to facilitate access to data that cannot be published in open access archives owing to ethical and legal risk. Based on an analysis of applicable research ethics and other legal and administrative frameworks, we discuss the general characteristics of this Registered Access Model, which would comprise a three-stage approval process: Authentication, Attestation and Authorization. We are piloting registered access with the Demonstration Projects of the Global Alliance for Genomics and Health for which it may provide a suitable mechanism for access to certain data types and to different types of data users.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.