| Title: | How ready are endocrine scientists to share retrospective clinical data for research : a perspective from the European Network for the Study of Adrenal Tumors |
|---|
| Authors: | ID Sojat, Antoan Stefan (Author)
ID Rance, Bastien (Author)
ID Neuraz, Antoine (Author)
ID Fassnacht, Martin (Author)
ID Beuschlein, Felix (Author)
ID Robledo, Mercedes (Author)
ID Luconi, Michaela (Author)
ID Argyro Vassiliadi, Dimitra (Author)
ID Stell, Anthony (Author)
ID Igaz, Peter (Author)
ID Kocjan, Tomaž (Research coworker), et al. |
|---|
| Files: |  PDF - Presentation file, download (655,44 KB)
MD5: 195F5E55D451FA555DBB2AD16EFA5472
 URL - Source URL, visit https://academic.oup.com/ejendo/article/192/4/491/8120680
|
|---|
| Language: | English |
|---|
| Typology: | 1.01 - Original Scientific Article |
|---|
| Organization: |  UKC LJ - Ljubljana University Medical Centre
|
|---|
| 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: | adrenal tumors, information technologies, endocrinology |
|---|
| Publication status: | Published |
|---|
| Publication version: | Version of Record |
|---|
| Year of publishing: | 2025 |
|---|
| Number of pages: | str. 491-501 |
|---|
| Numbering: | Vol. 192, iss. 4 |
|---|
| PID: | 20.500.12556/DiRROS-25136  |
|---|
| UDC: | 616.4 |
|---|
| ISSN on article: | 0804-4643 |
|---|
| DOI: | 10.1093/ejendo/lvaf005 |
|---|
| COBISS.SI-ID: | 262424067 |
|---|
| Publication date in DiRROS: | 12.01.2026 |
|---|
| Views: | 87 |
|---|
| Downloads: | 48 |
|---|
| Metadata: |    |
|---|
|
:
|
Copy citation |
|---|
| | | | Share: |  |
|---|
Hover the mouse pointer over a document title to show the abstract or click
on the title to get all document metadata. |
