20.500.12556/DiRROS-25136 How ready are endocrine scientists to share retrospective clinical data for research a perspective from the European Network for the Study of Adrenal Tumors 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 & 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 >35 EHR providers, and variable data collected. Variable stakeholders' implication for enabling data sharing was reported, with more lawyers (P = .023), patient representatives (P < .001), ethicists (P = .002), methodologists (P = .023), and information technology experts (P < .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 (<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. adrenal tumors information technologies endocrinology tumorji nadledvične žleze informacijske tehnologije endokrinologija true false true Angleški jezik Slovenski jezik Neznano 2026-01-12 13:37:08 2026-01-12 13:37:08 2026-01-13 03:45:13 0000-00-00 00:00:00 2025 0 0 str. 491-501 iss. 4 Vol. 192 Mar. 2025 0000-00-00 Zaloznikova Objavljeno NiDoloceno 0000-00-00 0000-00-00 0000-00-00 616.4 0804-4643 10.1093/ejendo/lvaf005 262424067 RAZ_Sojat_Antoan_Stefan_2025.pdf RAZ_Sojat_Antoan_Stefan_2025.pdf 1 195F5E55D451FA555DBB2AD16EFA5472 dbf28b0a2eabdd0ee6c13cdb6fd2b637723e3a663f73899d46de66ae32866603 990fd2b0-efb3-11f0-94a7-001a4af901a5 https://dirros.openscience.si/Dokument.php?lang=slv&id=37864 https://academic.oup.com/ejendo/article/192/4/491/8120680 0 6cbff628-efb3-11f0-94a7-001a4af901a5 https://dirros.openscience.si/Dokument.php?lang=slv&id=37863 Univerzitetni klinični center Ljubljana 0 0 0