ArticleEuropean journal of human genetics : EJHG2018
Registered access: authorizing data access.
Article in European journal of human genetics : EJHG, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 1 of them a synthesis that pooled it.
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, 1 synthesis or guideline pooled it.
- Pooled it
- Autism data sharing: Benefits, challenges, and recommendations.PLOS digital health · 2026Review
- A decade of research on genetic privacy: the findings of the GetPreCiSe Center at Vanderbilt University.Frontiers in genetics · 2025Review
- Large-scale genotype prediction from RNA sequence data necessitates a new ethical and policy framework.Nature genetics · 2024Article
- DS-PACK: Tool assembly for the end-to-end support of controlled access human data sharing.Scientific data · 2024Article
- Critical assessment of variant prioritization methods for rare disease diagnosis within the rare genomes project.Human genomics · 2024Article
- Achieving Procedural Parity in Managing Access to Genomic and Related Health Data: A Global Survey of Data Access Committee Members.Biopreservation and biobanking · 2024Article
- Future-proofing genomic data and consent management: a comprehensive review of technology innovations.GigaScience · 2024Review
- Critical assessment of variant prioritization methods for rare disease diagnosis within the Rare Genomes Project.medRxiv : the preprint server for health sciences · 2023Article
- The Canadian Open Neuroscience Platform-An open science framework for the neuroscience community.PLoS computational biology · 2023Article
- Consent Codes: Maintaining Consent in an Ever-expanding Open Science Ecosystem.Neuroinformatics · 2023Article
- Leveraging Algorithms to Improve Decision-Making Workflows for Genomic Data Access and Management.Biopreservation and biobanking · 2022Article
- Sociotechnical safeguards for genomic data privacy.Nature reviews. Genetics · 2022Review
- 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: International policies and standards for data sharing across genomic research and healthcare.Cell genomics · 2021Article
- GA4GH Passport standard for digital identity and access permissions.Cell genomics · 2021Article
- Open science datasets from PREVENT-AD, a longitudinal cohort of pre-symptomatic Alzheimer's disease.NeuroImage. Clinical · 2021Article
- Toward a Risk-Utility Data Governance Framework for Research Using Genomic and Phenotypic Data in Safe Havens: Multifaceted Review.Journal of medical Internet research · 2020Review
- Cloud bursting galaxy: federated identity and access management.Bioinformatics (Oxford, England) · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
47 authors.
Funding
Abstract
The Global Alliance for Genomics and Health (GA4GH) proposes a data access policy model-"registered access"-to increase and improve access to data requiring an agreement to basic terms and conditions, such as the use of DNA sequence and health data in research. A registered access policy would enable a range of categories of users to gain access, starting with researchers and clinical care professionals. It would also facilitate general use and reuse of data but within the bounds of consent restrictions and other ethical obligations. In piloting registered access with the Scientific Demonstration data sharing projects of GA4GH, we provide additional ethics, policy and technical guidance to facilitate the implementation of this access model in an international setting.
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.