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Understanding the clinical research lifecycle: An internship experience with application to a rare disease study

2025-07-29Dissertação de mestrado Acesso embargado
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dc.contributor.advisorSantos, Janete
dc.contributor.advisorAlves, Sandra Maria
dc.contributor.authorMachado, Raquel Oliveira
dc.date.accessioned2026-02-24T09:13:40Z
dc.date.available2026-02-24T09:13:40Z
dc.date.issued2025-07-29
dc.description.abstractClinical research is critical in advancing medical knowledge and improving patient care. This reports refers to the activities carried out during the internship at the Clinical Research Support Unit of the Faculty of Medicine of the University of Porto. The internship involved several stages of clinical study management: study registration, collection and organization of clinical data, and creation of case report forms. The F-CHECK study, a multicentre observational study, whose objective was to evaluate the prevalence and clinical characteristics of Fabry diseaase (FD) in the Portuguese population with idiopathic cardiomyopathies, was one of the main projects where activities were carried out. Fourteen patients (3,4%) with FD were reported from 409 participants. Non-parametric statistical tests were used with na α=0.05, along with Effect size measures. FD patients showed significant differences compared to non-FD, mainly in the hypertrophic group: prolonaged QRS (Ƿ=0.029), right bundle branch block (Ƿ˂0.001), fascicular block (Ƿ=0.033), and inferolateral fibrosis (Ƿ˂0.001). These results highlight the importance of systematic screening for FD among Portuguese patients with idiophatic cardiomyopathies, extending beyond the classic hypertrophic presentations. The internship conributed to the consolidation of competencies in clinical research and data analyis, strengthening preparation for future academic and professionals challenges.eng
dc.identifier.tid204178690
dc.identifier.urihttp://hdl.handle.net/10400.22/31887
dc.language.isoeng
dc.rights.uriN/A
dc.subjectClinical research
dc.subjectMulticentre study
dc.subjectClinical data
dc.subjectFabry disease
dc.titleUnderstanding the clinical research lifecycle: An internship experience with application to a rare disease studyeng
dc.typemaster thesis
dspace.entity.typePublication
thesis.degree.nameMestre em Bioestatística e Bioinformática Aplicadas à Saúde

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ESS - DM - Bioestatística e Bioinformática Aplicadas à Saúde