Background: For patients with rare diseases such as Duchenne and Becker muscular dystrophy (DMD/BMD), access to their health data is key to being able to advocate for themselves and be in control... Show moreBackground: For patients with rare diseases such as Duchenne and Becker muscular dystrophy (DMD/BMD), access to their health data is key to being able to advocate for themselves and be in control of their care. Since 2018, the DMD/BMD patient community has been committed to making DMD/BMD-related data FAIR, i.e., Findable, Accessible, Interoperable, and Reusable. On March 3, 2021, the second international meeting on FAIR data sharing for DMD/BMD was held virtually.Objective: The aim of this meeting report is to summarize the presentations and discussions of the meeting.Methods: During this meeting, the progress of FAIRification efforts since the first international meeting in 2019, new developments, stakeholder perspectives, and experiences from implementing FAIR data principles in practice were presented and discussed.Results: Over 120 attendees representing various stakeholder groups (ie, patient organizations, clinicians, clinical and academic researchers, pharmaceutical companies, regulators, and EU organizations) from 22 countries participated in the meeting. This meeting report summarizes the presentations and discussions from the meeting, provides an overview of the key lessons learned since the first meeting, and outlines the next steps.Conclusions: Patient organizations are key drivers of the FAIRification process in practice and dialogue with stakeholders is critical to success. Show less
Sabatini, F.M.; Lenoir, J.; Hattab, T.; Arnst, E.A.; Chytrý, M.; Dengler, J.; ... ; Bruelheide, H. 2021
Motivation: Assessing biodiversity status and trends in plant communities is critical for understanding, quantifying and predicting the effects of global change on ecosystems. Vegetation plots... Show moreMotivation: Assessing biodiversity status and trends in plant communities is critical for understanding, quantifying and predicting the effects of global change on ecosystems. Vegetation plots record the occurrence or abundance of all plant species co-occurring within delimited local areas. This allows species absences to be inferred, information seldom provided by existing global plant datasets. Although many vegetation plots have been recorded, most are not available to the global research community. A recent initiative, called ‘sPlot’, compiled the first global vegetation plot database, and continues to grow and curate it. The sPlot database, however, is extremely unbalanced spatially and environmentally, and is not open-access. Here, we address both these issues by (a) resampling the vegetation plots using several environmental variables as sampling strata and (b) securing permission from data holders of 105 local-to-regional datasets to openly release data. We thus present sPlotOpen, the largest open-access dataset of vegetation plots ever released. sPlotOpen can be used to explore global diversity at the plant community level, as ground truth data in remote sensing applications, or as a baseline for biodiversity monitoring.Main types of variable contained: Vegetation plots (n = 95,104) recording cover or abundance of naturally co-occurring vascular plant species within delimited areas. sPlotOpen contains three partially overlapping resampled datasets (c. 50,000 plots each), to be used as replicates in global analyses. Besides geographical location, date, plot size, biome, elevation, slope, aspect, vegetation type, naturalness, coverage of various vegetation layers, and source dataset, plot-level data also include community- weighted means and variances of 18 plant functional traits from the TRY Plant Trait Database.Spatial location and grain: Global, 0.01–40,000 m2.Time period and grain: 1888–2015, recording dates.Major taxa and level of measurement: 42,677 vascular plant taxa, plot-level records. Software format: Three main matrices (.csv), relationally linked. Show less
In professional soccer, increasing amounts of data are collected that harness great potential when it comes to analysing tactical behaviour. Unlocking this potential is difficult as big data... Show moreIn professional soccer, increasing amounts of data are collected that harness great potential when it comes to analysing tactical behaviour. Unlocking this potential is difficult as big data challenges the data management and analytics methods commonly employed in sports. By joining forces with computer science, solutions to these challenges could be achieved, helping sports science to find new insights, as is happening in other scientific domains. We aim to bring multiple domains together in the context of analysing tactical behaviour in soccer using position tracking data. A systematic literature search for studies employing position tracking data to study tactical behaviour in soccer was conducted in seven electronic databases, resulting in 2338 identified studies and finally the inclusion of 73 papers. Each domain clearly contributes to the analysis of tactical behaviour, albeit in - sometimes radically - different ways. Accordingly, we present a multidisciplinary framework where each domain's contributions to feature construction, modelling and interpretation can be situated. We discuss a set of key challenges concerning the data analytics process, specifically feature construction, spatial and temporal aggregation. Moreover, we discuss how these challenges could be resolved through multidisciplinary collaboration, which is pivotal in unlocking the potential of position tracking data in sports analytics. Show less
The GDPR aims to control the risks associated with the processing of personal data. It requires measures to minimise these risks and gives data subjects certain powers, such as the rights to be... Show moreThe GDPR aims to control the risks associated with the processing of personal data. It requires measures to minimise these risks and gives data subjects certain powers, such as the rights to be informed and to be forgotten. Big data is a relatively new technology, giving the controllers of data the power to permanently observe the users of digital services. Therefore this thesis answers the question whether the GDPR is suited to avert the risks and power shifts associated with big data. To answer this question, the GDPR is compared to earlier EU legislation associated with technological risks and power shifts. Additionally, the suitability of the GDPR’s anti-discrimination provisions are evaluated for the prevention of algorithmic discrimination. Results: The GDPR is not based on any discernible analysis of the risks of big data. Methods from EU environmental protection law and consumer protection law, aimed at technological risks and power shifts, were not applied. This can make evaluation of the GDPR’s effectiveness more difficult and could stand in the way of developing a coherent body of case law. The conclusion proposes a number of guidelines for the decision of court cases and points for evaluating the GDPR. Show less
Van Hout, T.; Schafraad, P.; Koetsenruijter, A.W.M. 2018
Dit themanummer bundelt vijf bijdragen van Vlaamse en Nederlandse onderzoekers over recente ontwikkelingen op het gebied van journalism studies. De bijdragen vloeien voort uit twee symposia: de... Show moreDit themanummer bundelt vijf bijdragen van Vlaamse en Nederlandse onderzoekers over recente ontwikkelingen op het gebied van journalism studies. De bijdragen vloeien voort uit twee symposia: de NeFCA-workshop ‘Wanted. Dead or alive. Journalism, journalists and their audiences in a changing media landscape’, gehouden op 25 november 2016 aan de Erasmus Universiteit, en het symposium ‘Methoden van journalism studies’, dat op 20 januari 2017 plaatsvond aan de Universiteit Leiden. Het themanummer opent met een drieluik over wellicht het meest in het oog springende vraagstuk: wat moeten we met big data? En hoe zouden we big data kunnen analyseren? Show less
