FAIR data retrieval for sensitive clinical research data in Galaxy
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PROVIDER: S-EPMC10821763 | biostudies-literature | 2024 Jan
REPOSITORIES: biostudies-literature
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Project description:Solutions for the generation of FAIR (Findable, Accessible, Interoperable, and Reusable) data and metadata in experimental tribology are currently lacking. Nonetheless, FAIR data production is a promising path for implementing scalable data science techniques in tribology, which can lead to a deeper understanding of the phenomena that govern friction and wear. Missing community-wide data standards, and the reliance on custom workflows and equipment are some of the main challenges when it comes to adopting FAIR data practices. This paper, first, outlines a sample framework for scalable generation of FAIR data, and second, delivers a showcase FAIR data package for a pin-on-disk tribological experiment. The resulting curated data, consisting of 2,008 key-value pairs and 1,696 logical axioms, is the result of (1) the close collaboration with developers of a virtual research environment, (2) crowd-sourced controlled vocabulary, (3) ontology building, and (4) numerous – seemingly – small-scale digital tools. Thereby, this paper demonstrates a collection of scalable non-intrusive techniques that extend the life, reliability, and reusability of experimental tribological data beyond typical publication practices.
| S-EPMC9203546 | biostudies-literature
Project description:Primary mitochondrial diseases (PMD) are genetic disorders with extensive clinical and molecular heterogeneity where therapeutic development efforts have faced multiple challenges. Clinical trial design, outcome measure selection, lack of reliable biomarkers, and deficiencies in long-term natural history data sets remain substantial challenges in the increasingly active PMD therapeutic development space. Developing "FAIR" (findable, accessible, interoperable, reusable) data standards to make data sharable and building a more transparent community data sharing paradigm to access clinical research metadata are the first steps to address these challenges. This collaborative community effort describes the current landscape of PMD clinical research data resources available for sharing, obstacles, and opportunities, including ways to incentivize and encourage data sharing among diverse stakeholders. This work highlights the importance of, and challenges to, developing a unified system that enables clinical research structured data sharing and supports harmonized data deposition standards across clinical consortia and research groups. The goal of these efforts is to improve the efficiency and effectiveness of drug development and improve understanding of the natural history of PMD. This initiative aims to maximize the benefit for PMD patients, research, industry, and other stakeholders while acknowledging challenges related to differing needs and international policies on data privacy, security, management, and oversight.
| S-EPMC8936395 | biostudies-literature
Project description:Over the last 5 years, multiple stakeholders in the field of spinal cord injury (SCI) research have initiated efforts to promote publications standards and enable sharing of experimental data. In 2016, the National Institutes of Health/National Institute of Neurological Disorders and Stroke hosted representatives from the SCI community to streamline these efforts and discuss the future of data sharing in the field according to the FAIR (Findable, Accessible, Interoperable and Reusable) data stewardship principles. As a next step, a multi-stakeholder group hosted a 2017 symposium in Washington, DC entitled "FAIR SCI Ahead: the Evolution of the Open Data Commons for Spinal Cord Injury research." The goal of this meeting was to receive feedback from the community regarding infrastructure, policies, and organization of a community-governed Open Data Commons (ODC) for pre-clinical SCI research. Here, we summarize the policy outcomes of this meeting and report on progress implementing these policies in the form of a digital ecosystem: the Open Data Commons for Spinal Cord Injury (ODC-SCI.org). ODC-SCI enables data management, harmonization, and controlled sharing of data in a manner consistent with the well-established norms of scholarly publication. Specifically, ODC-SCI is organized around virtual "laboratories" with the ability to share data within each of three distinct data-sharing spaces: within the laboratory, across verified laboratories, or publicly under a creative commons license (CC-BY 4.0) with a digital object identifier that enables data citation. The ODC-SCI implements FAIR data sharing and enables pooled data-driven discovery while crediting the generators of valuable SCI data.
| S-EPMC7071068 | biostudies-literature
Project description:The availability of high-throughput molecular profiling techniques has provided more accurate and informative data for regular clinical studies. Nevertheless, complex computational workflows are required to interpret these data. Over the past years, the data volume has been growing explosively, requiring robust human data management to organise and integrate the data efficiently. For this reason, we set up an ELIXIR implementation study, together with the Translational research IT (TraIT) programme, to design a data ecosystem that is able to link raw and interpreted data. In this project, the data from the TraIT Cell Line Use Case (TraIT-CLUC) are used as a test case for this system. Within this ecosystem, we use the European Genome-phenome Archive (EGA) to store raw molecular profiling data; tranSMART to collect interpreted molecular profiling data and clinical data for corresponding samples; and Galaxy to store, run and manage the computational workflows. We can integrate these data by linking their repositories systematically. To showcase our design, we have structured the TraIT-CLUC data, which contain a variety of molecular profiling data types, for storage in both tranSMART and EGA. The metadata provided allows referencing between tranSMART and EGA, fulfilling the cycle of data submission and discovery; we have also designed a data flow from EGA to Galaxy, enabling reanalysis of the raw data in Galaxy. In this way, users can select patient cohorts in tranSMART, trace them back to the raw data and perform (re)analysis in Galaxy. Our conclusion is that the majority of metadata does not necessarily need to be stored (redundantly) in both databases, but that instead FAIR persistent identifiers should be available for well-defined data ontology levels: study, data access committee, physical sample, data sample and raw data file. This approach will pave the way for the stable linkage and reuse of data.
| S-EPMC5657030 | biostudies-literature
Project description:According to the FAIR principles, data produced by scientific research should be findable, accessible, interoperable, and reusable-for instance, to be used in machine learning algorithms. However, to date, there is no estimate of the quantity or quality of dental research data evaluated via the FAIR principles. We aimed to determine the availability of open data in dental research and to assess compliance with the FAIR principles (or FAIRness) of shared dental research data. We downloaded all available articles published in PubMed-indexed dental journals from 2016 to 2021 as open access from Europe PubMed Central. In addition, we took a random sample of 500 dental articles that were not open access through Europe PubMed Central. We assessed data sharing in the articles and compliance of shared data to the FAIR principles programmatically. Results showed that of 7,509 investigated articles, 112 (1.5%) shared data. The average (SD) level of compliance with the FAIR metrics was 32.6% (31.9%). The average for each metric was as follows: findability, 3.4 (2.7) of 7; accessibility, 1.0 (1.0) of 3; interoperability, 1.1 (1.2) of 4; and reusability, 2.4 (2.6) of 10. No considerable changes in data sharing or quality of shared data occurred over the years. Our findings indicated that dental researchers rarely shared data, and when they did share, the FAIR quality was suboptimal. Machine learning algorithms could understand 1% of available dental research data. These undermine the reproducibility of dental research and hinder gaining the knowledge that can be gleaned from machine learning algorithms and applications.
| S-EPMC9516597 | biostudies-literature
Project description:With a rising number of scientific datasets published and the need to test their Findable, Accessible, Interoperable, and Reusable (FAIR) compliance repeatedly, data stakeholders have recognized the importance of an automated FAIR assessment. This paper presents a programmatic solution for assessing the FAIRness of research data. We describe the translation of the FAIR data principles into measurable metrics and the application of the metrics in evaluating FAIR compliance of research data through an open-source tool we developed. For each metric, we conceptualized and implemented practical tests drawn upon prevailing data curation and sharing practices, and the paper discusses their rationales. We demonstrate the work by evaluating multidisciplinary datasets from trustworthy repositories, followed by recommendations and improvements. We believe our experience in developing and applying the metrics in practice and the lessons we learned from it will provide helpful information to others developing similar approaches to assess different types of digital objects and services.
| S-EPMC8600246 | biostudies-literature
Project description:BackgroundAccording to the FAIR principles (Findable, Accessible, Interoperable, and Reusable), scientific research data should be findable, accessible, interoperable, and reusable. The COVID-19 pandemic has led to massive research activities and an unprecedented number of topical publications in a short time. However, no evaluation has assessed whether this COVID-19-related research data has complied with FAIR principles (or FAIRness).ObjectiveOur objective was to investigate the availability of open data in COVID-19-related research and to assess compliance with FAIRness.MethodsWe conducted a comprehensive search and retrieved all open-access articles related to COVID-19 from journals indexed in PubMed, available in the Europe PubMed Central database, published from January 2020 through June 2023, using the metareadr package. Using rtransparent, a validated automated tool, we identified articles with links to their raw data hosted in a public repository. We then screened the link and included those repositories that included data specifically for their pertaining paper. Subsequently, we automatically assessed the adherence of the repositories to the FAIR principles using FAIRsFAIR Research Data Object Assessment Service (F-UJI) and rfuji package. The FAIR scores ranged from 1-22 and had four components. We reported descriptive analysis for each article type, journal category, and repository. We used linear regression models to find the most influential factors on the FAIRness of data.Results5,700 URLs were included in the final analysis, sharing their data in a general-purpose repository. The mean (standard deviation, SD) level of compliance with FAIR metrics was 9.4 (4.88). The percentages of moderate or advanced compliance were as follows: Findability: 100.0%, Accessibility: 21.5%, Interoperability: 46.7%, and Reusability: 61.3%. The overall and component-wise monthly trends were consistent over the follow-up. Reviews (9.80, SD = 5.06, n = 160), articles in dental journals (13.67, SD = 3.51, n = 3) and Harvard Dataverse (15.79, SD = 3.65, n = 244) had the highest mean FAIRness scores, whereas letters (7.83, SD = 4.30, n = 55), articles in neuroscience journals (8.16, SD = 3.73, n = 63), and those deposited in GitHub (4.50, SD = 0.13, n = 2,152) showed the lowest scores. Regression models showed that the repository was the most influential factor on FAIRness scores (R2 = 0.809).ConclusionThis paper underscored the potential for improvement across all facets of FAIR principles, specifically emphasizing Interoperability and Reusability in the data shared within general repositories during the COVID-19 pandemic.
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Project description:IntroductionThe agriculture genomics community has numerous data submission standards available, but the standards for describing and storing single-cell (SC, e.g., scRNA- seq) data are comparatively underdeveloped.MethodsTo bridge this gap, we leveraged recent advancements in human genomics infrastructure, such as the integration of the Human Cell Atlas Data Portal with Terra, a secure, scalable, open-source platform for biomedical researchers to access data, run analysis tools, and collaborate. In parallel, the Single Cell Expression Atlas at EMBL-EBI offers a comprehensive data ingestion portal for high-throughput sequencing datasets, including plants, protists, and animals (including humans). Developing data tools connecting these resources would offer significant advantages to the agricultural genomics community. The FAANG data portal at EMBL-EBI emphasizes delivering rich metadata and highly accurate and reliable annotation of farmed animals but is not computationally linked to either of these resources.ResultsHerein, we describe a pilot-scale project that determines whether the current FAANG metadata standards for livestock can be used to ingest scRNA-seq datasets into Terra in a manner consistent with HCA Data Portal standards. Importantly, rich scRNA-seq metadata can now be brokered through the FAANG data portal using a semi-automated process, thereby avoiding the need for substantial expert curation. We have further extended the functionality of this tool so that validated and ingested SC files within the HCA Data Portal are transferred to Terra for further analysis. In addition, we verified data ingestion into Terra, hosted on Azure, and demonstrated the use of a workflow to analyze the first ingested porcine scRNA-seq dataset. Additionally, we have also developed prototype tools to visualize the output of scRNA-seq analyses on genome browsers to compare gene expression patterns across tissues and cell populations. This JBrowse tool now features distinct tracks, showcasing PBMC scRNA-seq alongside two bulk RNA-seq experiments.DiscussionWe intend to further build upon these existing tools to construct a scientist-friendly data resource and analytical ecosystem based on Findable, Accessible, Interoperable, and Reusable (FAIR) SC principles to facilitate SC-level genomic analysis through data ingestion, storage, retrieval, re-use, visualization, and comparative annotation across agricultural species.
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Project description:The genomes of thousands of individuals are profiled within Dutch healthcare and research each year. However, this valuable genomic data, associated clinical data and consent are captured in different ways and stored across many systems and organizations. This makes it difficult to discover rare disease patients, reuse data for personalized medicine and establish research cohorts based on specific parameters. FAIR Genomes aims to enable NGS data reuse by developing metadata standards for the data descriptions needed to FAIRify genomic data while also addressing ELSI issues. We developed a semantic schema of essential data elements harmonized with international FAIR initiatives. The FAIR Genomes schema v1.1 contains 110 elements in 9 modules. It reuses common ontologies such as NCIT, DUO and EDAM, only introducing new terms when necessary. The schema is represented by a YAML file that can be transformed into templates for data entry software (EDC) and programmatic interfaces (JSON, RDF) to ease genomic data sharing in research and healthcare. The schema, documentation and MOLGENIS reference implementation are available at https://fairgenomes.org .
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Project description:Research misconduct has become an important matter of concern in the scientific community. The extent to which such behavior occurs early in science education has received little attention. In the current study, using the web-based data collection program REDCap, we obtained responses to an anonymous and voluntary survey about science fair from 65 high school students who recently competed in the Dallas Regional Science and Engineering Fair and from 237 STEM-track, post-high school students (undergraduates, 1st year medical students, and 1st year biomedical graduate students) doing research at UT Southwestern Medical Center. Of the post-high school students, 24% had competed in science fair during their high school education. Science fair experience was similar overall for the local cohort of Dallas regional students and the more diverse state/national cohort of post-high school students. Only one student out of 122 reported research misconduct, in his case making up the data. Unexpectedly, post-high school students who did not participate in science fair anticipated that carrying out science fair would be much more difficult than actually was the case, and 22% of the post-high school students anticipated that science fair participants would resort to research misconduct to overcome obstacles. No gender-based differences between students' science fair experiences or expectations were evident.
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