Scientific article
OA Policy
English

How ready are endocrine scientists to share retrospectiveclinical data for research : a perspective from the EuropeanNetwork for the Study of Adrenal Tumors

CollaboratorsMavromati, Maria
Published inEuropean journal of endocrinology, vol. 192, no. 4, p. 491-509
Publication date2025-03-27
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.

Keywords
  • Endocrine
  • Clinical data
  • Data sharing
  • Endocrinology
  • Information technologies
  • Legal framework
  • Adrenal tumors
Citation (ISO format)
SOJAT, Antoan Stefan et al. How ready are endocrine scientists to share retrospectiveclinical data for research : a perspective from the EuropeanNetwork for the Study of Adrenal Tumors. In: European journal of endocrinology, 2025, vol. 192, n° 4, p. 491–509. doi: 10.1093/ejendo/lvaf005
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Article (Published version)
Identifiers
Journal ISSN0804-4643
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