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SHR Neuro Cancer Cardio Lipid Metab Microb

Sojat, AS; Rance, B; Neuraz, A; Fassnacht, M; Beuschlein, F; Robledo, M; Luconi, M; Vassiliadi, D; Stell, A; Igaz, P; Dugic, B; Marina, LV; Burgun, A; Kastelan, D; Assie, G, , European, Network, for, the, Study, of, Adrenal, Tumors, (ENSAT)/COST, Action, Harmonisation, (CA, 20122), consortium .
How ready are endocrine scientists to share retrospective clinical data for research: a perspective from the European Network for the Study of Adrenal Tumors.
Eur J Endocrinol. 2025; 192(4):491-509 Doi: 10.1093/ejendo/lvaf005
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Pilz Stefan

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Abstract:

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.

Find related publications in this database (using NLM MeSH Indexing)

Humans - administration & dosage

Europe - epidemiology

Retrospective Studies - administration & dosage

Information Dissemination - methods

Adrenal Gland Neoplasms - therapy

Biomedical Research - administration & dosage

Electronic Health Records - administration & dosage

Surveys and Questionnaires - administration & dosage

Endocrinology - administration & dosage

Find related publications in this database (Keywords)

data sharing

adrenal tumors

endocrinology

legal framework

information technologies

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