26 research outputs found
Strategies to shorten diagnostic delays for late infantile neuronal ceroid lipofuscinosis type 2 (CLN2 disease)
No full textImpact of the COVID-19 lockdown on patients and families with Dravet syndrome
No full textWe explored the impact of coronavirus virus 2019 (COVID-19) pandemic on patients with Dravet syndrome (DS) and their family. With European patient advocacy groups (PAGs), we developed an online survey in 10 languages to question health status, behavior, personal protection, and health services before and after lockdown. Approximately 538 European PAG members received electronic invitations. Survey ran from April 14, to May 17, 2020, with 219 answers; median age 9year 10months. Protection against infection was highly used prior to COVID-19, but 88% added facemask-use according to pandemic recommendations. Only one patient was tested positive for COVID-19. Most had stable epilepsy during lockdown, and few families (4%) needed emergency care during lockdown. However, behavior disorder worsened in over one-third of patients, regardless of epilepsy changes. Half of appointments scheduled prior to lockdown were postponed; 12 patients (11%) had appointments fulfilled; and 39 (36%) had remote consultations. Responders welcomed remote consultations. Half of responders were unsatisfied with psychological remote support as only few (21 families) received this support. None of the five of patient in clinical trials stopped investigational treatment. Prior adoption of protective measures against general infection might have contributed to avoiding COVID-19 infections. Protocols for the favored remote contact ought to now be prepared
Specifying and Operationalizing an Organizational Theory of Crowdsourcing
No full textIntroduction: Despite rapid developments across multiple areas of research and practice, an organizational-level theory of Crowdsourcing has yet to emerge. Objectives: Therefore, this thesis has two major objectives; 1) specify the boundaries, constructs, and relationships of an organizational-level theory of Crowdsourcing, and 2) begin the theoretical validation process by operationalizing the theory for new exploratory, explanatory, and conceptual research. Methods: In respect to the first objective, an organizational-level theory of Crowdsourcing is created through inductive processes based upon observations of the real-world, and the extant organizational literature. In respect to the second objective, a mixed-methods research design is implemented to present three separate studies that use the theoretical perspective as a lens to operationalize new exploratory, explanatory, and conceptual Crowdsourcing research. Results: The Crowd Capital perspective is introduced, and defines three new constructs for the Crowdsourcing research; Dispersed Knowledge, Crowd Capability, and Crowd Capital. Crowd Capital theory is shown to be a valid theoretical contribution in the management research by illustrating the perspective’s incremental originality and scientific utility. Conclusion: The thesis develops and validates an organizational-level theory explaining how and why organizations implement Crowdsourcing, and through the exploratory and explanatory operationalizations of the Crowd Capital perspective, this work contributes to the empirical knowledge-base in the Crowdsourcing research. Further, this thesis contributes methodologically by illustrating and implementing a mixed-methods research design for theory validation in the Crowdsourcing research, while also supplying managers and executives with detailed guidance on the trade-offs inherent to the different modalities of Crowdsourcing. Thesis Organization: This thesis is organized in a monograph format comprised of eight chapters; 1) Introduction, 2) Literature review, 3) Theoretical model, 4) Methodology, 5) Exploratory research, 6) Explanatory research, 7) Conceptual research, and 8) Conclusion. As an outcome of this thesis, three journal articles and five conference proceedings have been accepted in peer-reviewed outlets1, and the author has been awarded a mini-track about Crowdsourcing at one of the most prestigious conferences in the field. The articles and the conference mini-track details are listed in Appendix A & B at the end of the dissertation
Possible protective effects of docosahexaenoic acid (DHA) in combined prenatal exposure to methylmercury and long chain polyunsaturated fatty acids (LCPUFA)
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