ArticleFrontiers in genetics2022
Democratizing clinical-genomic data: How federated platforms can promote benefits sharing in genomics.
Article in Frontiers in genetics, 2022. 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
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
27 citing papers in PubMed, 34 citations in OpenAlex.
- Global research synergy: Advancing fundamental Parkinson's research through international collaboration.Journal of Parkinson's disease · 2026Review
- Unleashing potential: assessing Africa's readiness for the data science revolution to impact health.Nature communications · 2026Review
- Bridging global diversity gaps in Parkinson disease research.Nature reviews. Neurology · 2026Review
- Collective action for responsible global health data sharing and use.BMJ global health · 2026Review
- Autism data sharing: Benefits, challenges, and recommendations.PLOS digital health · 2026Review
- Methods for safely sharing dual-use genetic data.Frontiers in microbiology · 2026Article
- Federated, governed, and interoperable? The emerging architecture of public human genomic data infrastructures: a European perspective.Frontiers in genetics · 2026Review
- An integrative neurogenomics workflow for precision medicine in neurodegenerative disorders.Frontiers in dementia · 2026Article
- The European Health Data Space and biobanking in Europe: synergies, tensions and the future governance of data-driven health research.Frontiers in genetics · 2026Review
- Analysis Methods for Diagnosing Rare Neurodevelopmental Diseases with Episignatures: A Systematic Review of the Literature.Biomedicines · 2025Review
- Data visiting governance: a conceptual framework.Human genomics · 2025Review
- MINDDS-connect: a federated data platform integrating biobanks for meta cohort building and analysis.European journal of human genetics : EJHG · 2025Article
- A scoping review of the governance of federated learning in healthcare.NPJ digital medicine · 2025Article
- A state-of-the-art review of registries in spinal muscular atrophy: A valuable resource for clinical research.Journal of neuromuscular diseases · 2025Review
- The role and value of real-world evidence in health technology decision-making in France, Germany, Italy, Spain, and the UK: insights on external control arms.International journal of technology assessment in health care · 2025Review
- Data stewardship and curation practices in AI-based genomics and automated microscopy image analysis for high-throughput screening studies: promoting robust and ethical AI applications.Human genomics · 2025Review
- Exploring Metadata Catalogs in Health Care Data Ecosystems: Taxonomy Development Study.JMIR formative research · 2025Article
- A Review on Integrating Breast Cancer Clinical Data: A Unified Platform Perspective.Current treatment options in oncology · 2025Review
- Population health management of human phenotype ontology.Frontiers in artificial intelligence · 2025Article
- Enabling genomic surveillance from 30 years of linked English sentinel network data: The Wellcome Quinquagenarian (QQG) Biomedical Resource.Wellcome open research · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Since the first sequencing of the human genome, associated sequencing costs have dramatically lowered, leading to an explosion of genomic data. This valuable data should in theory be of huge benefit to the global community, although unfortunately the benefits of these advances have not been widely distributed. Much of today's clinical-genomic data is siloed and inaccessible in adherence with strict governance and privacy policies, with more than 97% of hospital data going unused, according to one reference. Despite these challenges, there are promising efforts to make clinical-genomic data accessible and useful without compromising security. Specifically, federated data platforms are emerging as key resources to facilitate secure data sharing without having to physically move the data from outside of its organizational or jurisdictional boundaries. In this perspective, we summarize the overarching progress in establishing federated data platforms, and highlight critical considerations on how they should be managed to ensure patient and public trust. These platforms are enabling global collaboration and improving representation of underrepresented groups, since sequencing efforts have not prioritized diverse population representation until recently. Federated data platforms, when combined with advances in no-code technology, can be accessible to the diverse end-users that make up the genomics workforce, and we discuss potential strategies to develop sustainable business models so that the platforms can continue to enable research long term. Although these platforms must be carefully managed to ensure appropriate and ethical use, they are democratizing access and insights to clinical-genomic data that will progress research and enable impactful therapeutic findings.
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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.