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<rdf:RDF xmlns:rdf="http://www.w3.org/1999/02/22-rdf-syntax-ns#" xmlns:dc="http://purl.org/dc/elements/1.1/"><rdf:Description rdf:about="https://dirros.openscience.si/IzpisGradiva.php?id=25136"><dc:title>How ready are endocrine scientists to share retrospective clinical data for research</dc:title><dc:creator>Sojat,	Antoan Stefan	(Avtor)
	</dc:creator><dc:creator>Rance,	Bastien	(Avtor)
	</dc:creator><dc:creator>Neuraz,	Antoine	(Avtor)
	</dc:creator><dc:creator>Fassnacht,	Martin	(Avtor)
	</dc:creator><dc:creator>Beuschlein,	Felix	(Avtor)
	</dc:creator><dc:creator>Robledo,	Mercedes	(Avtor)
	</dc:creator><dc:creator>Luconi,	Michaela	(Avtor)
	</dc:creator><dc:creator>Argyro Vassiliadi,	Dimitra	(Avtor)
	</dc:creator><dc:creator>Stell,	Anthony	(Avtor)
	</dc:creator><dc:creator>Igaz,	Peter	(Avtor)
	</dc:creator><dc:creator>Kocjan,	Tomaž	(Sodelavec pri raziskavi)
	</dc:creator><dc:subject>adrenal tumors</dc:subject><dc:subject>information technologies</dc:subject><dc:subject>endocrinology</dc:subject><dc:description>Objective: Individual patients' data sharing requires interoperability, security, ethical, and legal compliance. The aim was to assess the landscape and sharing capacities between endocrine researchers. Design: A standardized survey (SurveyMonkey®) with 67 questions was sent to European Network for the Study of Adrenal Tumors centers. Methods: Answers were counted as absolute numbers and percentages. Comparisons between inclusiveness target countries (ITC) and non-ITC (defined by Cooperation in Science &amp; Technology Action) were performed using Fisher's exact test. Results: Seventy-three centers from 34 countries answered the survey. Electronic health record (EHR) systems are now the main source of data (90%). However, significant variability was reported, entailing &gt;35 EHR providers, and variable data collected. Variable stakeholders' implication for enabling data sharing was reported, with more lawyers (P = .023), patient representatives (P &lt; .001), ethicists (P = .002), methodologists (P = .023), and information technology experts (P &lt; .001) in non-ITC centers. Implication of information technologies experts for data collection and sharing was underwhelming (33%). Funding for clinical research was higher in non-ITC than in ITC for clinical trials (P = .01) and for registry-based and cohort studies (P = .05). However, for retrospective studies addressing a specific clinical question, the funding was either very low (&lt;10%) or nonexistent for both ITC and non-ITC (37% and 46%, respectively), with no dedicated funding for information technology (86%) and ethical and regulatory aspects (88%). Conclusions: In the absence of dedicated funding for retrospective research, current requirements for data sharing are obstacles.</dc:description><dc:date>2025</dc:date><dc:date>2026-01-12 13:37:08</dc:date><dc:type>Neznano</dc:type><dc:identifier>25136</dc:identifier><dc:language>sl</dc:language></rdf:Description></rdf:RDF>
