ArticleGenome medicine2013
Implementing a successful data-management framework: the UK10K managed access model.
Article in Genome medicine, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 papers.
What it found
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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
27 citing papers in PubMed.
- Governing Personalized Health: A Scoping Review.Frontiers in genetics · 2021Article
- Governance of research consortia: challenges of implementing Responsible Research and Innovation within Europe.Life sciences, society and policy · 2020Article
- The Roles of ApoC-III on the Metabolism of Triglyceride-Rich Lipoproteins in Humans.Frontiers in endocrinology · 2020Review
- Emerging Evidence that ApoC-III Inhibitors Provide Novel Options to Reduce the Residual CVD.Current atherosclerosis reports · 2019Review
- The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project.Life sciences, society and policy · 2018Article
- Rare variant analysis in multiply affected families, association studies and functional analysis suggest a role for the ITGΒ4 gene in schizophrenia and bipolar disorder.Schizophrenia research · 2018Article
- Paediatric genomics: diagnosing rare disease in children.Nature reviews. Genetics · 2018Review
- Balancing the local and the universal in maintaining ethical access to a genomics biobank.BMC medical ethics · 2017Review
- Human genomics projects and precision medicine.Gene therapy · 2017Review
- PhredEM: a phred-score-informed genotype-calling approach for next-generation sequencing studies.Genetic epidemiology · 2017Article
- Gene-based segregation method for identifying rare variants in family-based sequencing studies.Genetic epidemiology · 2017Article
- Intensification: A Resource for Amplifying Population-Genetic Signals with Protein Repeats.Journal of molecular biology · 2017Article
- An ethnically relevant consensus Korean reference genome is a step towards personal reference genomes.Nature communications · 2016Article
- A uniform survey of allele-specific binding and expression over 1000-Genomes-Project individuals.Nature communications · 2016Article
- The European Bioinformatics Institute in 2016: Data growth and integration.Nucleic acids research · 2016Article
- Article
- Leveraging ancestry to improve causal variant identification in exome sequencing for monogenic disorders.European journal of human genetics : EJHG · 2016Article
- Abundant contribution of short tandem repeats to gene expression variation in humans.Nature genetics · 2016Article
- Design and Implementation of the International Genetics and Translational Research in Transplantation Network.Transplantation · 2015Article
- Next-generation sequencing-based genome diagnostics across clinical genetics centers: implementation choices and their effects.European journal of human genetics : EJHG · 2015Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
Abstract
This paper outlines the history behind open access principles and describes the development of a managed access data-sharing process for the UK10K Project, currently Britain's largest genomic sequencing consortium (2010 to 2013). Funded by the Wellcome Trust, the purpose of UK10K was two-fold: to investigate how low-frequency and rare genetic variants contribute to human disease, and to provide an enduring data resource for future research into human genetics. In this paper, we discuss the challenge of reconciling data-sharing principles with the practicalities of delivering a sequencing project of UK10K's scope and magnitude. We describe the development of a sustainable, easy-to-use managed access system that allowed rapid access to UK10K data, while protecting the interests of participants and data generators alike. Specifically, we focus in depth on the three key issues that emerge in the data pipeline: study recruitment, data release and data access.
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.