EYES2024 ESE Young Endocrinologists and Scientists (EYES) 2024 Adrenals and Neuroendocrine Tumors (17 abstracts)
How ready are endocrine scientists to share clinical data for research: a europe-wide study throughout the adrenal tumor research consortium
Antoan Stefan Sojat 1,2 , Bastien Rance 3 , Antoine Neuraz 3 , Martin Fassnacht 4 , Felix Beuchlein 5,6,7 , Mercedes Robledo 8,9 , Michaela Luconi 10,11 , Dimitra Vasilliadi 12 , Anthony Stell 13 , Peter Igaz 14,15 , Bogdan Dugic 16 , Ljiljana Marina 1,2 , Anita Burgun* 3 , Darko Ka�telan* 17,18 & Guillaume Assie* 19,20
1National Centre for Infertility and Endocrinology of Gender, Clinic of Endocrinology, Diabetes and Metabolic Diseases, University Clinical Centre of Serbia, Belgrade, Serbia; 2Faculty of Medicine, University of Belgrade, Belgrade, Serbia; 3INSERM, UMR S 1138, Cordeliers Research Center, Université de Paris, Paris, France; 4Department of Medicine, Division of Endocrinology and Diabetes, University Hospital, University of Würzburg, 97080 Würzburg, Germany; 5Department of Endocrinology, Diabetology and Clinical Nutrition, University Hospital Zurich (USZ) and University of Zurich (UZH), CH-8091 Zurich, Switzerland; 6Medizinische Klinik und Poliklinik IV, Klinikum der Universit�t, Ludwig-Maximilians-Universit�t, Munich, Germany; 7The LOOP Zurich – Medical Research Center, Zurich, Switzerland; 8Hereditary Endocrine Cancer Group, Human Cancer Genetics Programme, Spanish National Cancer Research Centre (CNIO), Madrid, Spain; 9Biomedical Research Networking Centre on Rare Diseases (CIBERER), Institute of Health Carlos III, Madrid, Spain; 10Endocrinology Unit, Department of Experimental and Clinical Biomedical Sciences Mario Serio�; University of Florence, Florence, Italy; 11Centro di Ricerca e Innovazione sulle Patologie Surrenaliche-Azienda Ospedaliero Universitaria Careggi, Florence, Italy; 12Department of Endocrinology and Diabetes, National Expertise Center for Rare Endocrine Diseases, Attikon University Hospital, Athens, Greece; 13School of Computing and Information Systems, The University of Melbourne, Melbourne, Australia; 14Department of Endocrinology, ENS@T Research Center of Excellence, Faculty of Medicine, Semmelweis University, H-1083 Budapest, Hungary; 15Department of Internal Medicine and Oncology, Faculty of Medicine, Semmelweis University, H-1083 Budapest, Hungary; 16The University of Belgrade School of Electrical Engineering, Belgrade, Serbia; 17School of Medicine, University of Zagreb, Zagreb, Croatia; 18Department of Endocrinology, University Hospital Zagreb, Zagreb, Croatia; 19Department of Endocrinology, Reference Center for Rare Adrenal Diseases, Reference Center for Rare Adrenal Cancers, Hôpital Cochin, Assistance Publique Hôpitaux de Paris, Paris, France; 20Institut Cochin, Institut National de la Santé et de la Recherche Médicale U1016, Centre National de la Recherche Scientifique UMR 8104, Université Paris Descartes, Sorbonne Paris Cité, Paris, France
Context: Medical data sharing is central for clinical research. Physicians have always shared data for multicentric retrospective studies. However, in the current framework, clinical data exchange requires a complex set-up, featuring interoperability, security, ethical and legal compliance.
Objectives: To ask adrenal tumor researchers and clinicians from the European network for study on adrenal tumors (ENSAT) about the landscape of data management and sharing capacities in the context of legal, information technology and ethical considerations.
Methods: Data collection was performed through a standardized survey with a total of 67 questions sent to 140 clinical and research entities in 36 European countries. All research entities were ENSAT expert clinical and/or research centers. The survey was filled out once by each center, using the SurveyMonkey ® system. Answers were counted as absolute numbers. Percentages were calculated. Comparisons of answers between inclusiveness target countries (ITC) and non-ITC (as defined by the Cost Action program) were performed using Fisher exact tests.
Results: Seventy-three centers from 34 countries answered the survey. The majority of the surveyed participants use an Electronic Health Record (EHR) system, which is now the main source of data (n = 66/73, 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 = 0.023), patient representatives (P < 0.001), ethicists (P = 0.002), methodologists (P = 0.023) and information technology experts (P < 0.001) in non-ITC centers. Globally, implication of information technologies experts for the purpose of data collection and sharing was underwhelming (n = 24/73, 33%). Funding for clinical research was found to be higher in non-ITC than in ITC for clinical trials (P = 0.01) and for registry-based and cohort studies (P = 0.05). However, for retrospective studies addressing a specific clinical question, the funding was either very low (<10%) or non-existent for both ITC and non-ITC (n = 22/59, 37% and 27/59, 46% respectively), corresponding to the absence of dedicated support for information technology (n = 51/59, 86%) and ethical and regulatory aspects (n = 52/59, 88%) for these studies.
Conclusions: In the absence of dedicated funding for retrospective research, current requirements for data sharing are obstacles. For the future of data collection on adrenal tumors, retrospective analyses in Europe depend on the capability of academic institutions to provide and standardize sponsorships and agreements, together with the use of simple and versatile information technology tools.
Article tools
My recent searches
My recently viewed abstracts
Authors
Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
© Bioscientifica 2024 |
Privacy policy |
Cookie settings
BiosciAbstracts
Bioscientifica Abstracts is the gateway to a series of products that provide a permanent, citable record of abstracts for biomedical and life science conferences.
Find out more