Disclosure of onset-predictive biomarker results to research participants at risk of genetic frontotemporal dementia: a European perspective
Researchers involved in clinical trials using OPBTs can adopt this disclosure process as a framework for responsible communication of OPBT results at their study site. The process was designed for international applicability and facilitates the alignment of disclosure processes for clinical trial recruitment across European countries.
Authors
- John Cornelis Van Swieten (ORCID: https://orcid.org/0000-0001-6278-6844)
- Caroline Graff (ORCID: https://orcid.org/0000-0002-9949-2951)
- Eino Solje (ORCID: https://orcid.org/0000-0001-9940-9524)
- Laura Donker Kaat (ORCID: https://orcid.org/0009-0007-2436-0931)
- Eline M. Bunnik (ORCID: https://orcid.org/0000-0003-1481-6222)
- Harro Seelaar (ORCID: https://orcid.org/0000-0003-1989-7527)
- Sergi Borrego‐Écija (ORCID: https://orcid.org/0000-0003-2557-0010)
- Arabella Bouzigues (ORCID: https://orcid.org/0000-0002-0267-8590)
- Jonathan D. Rohrer (ORCID: https://orcid.org/0000-0002-6155-8417)
- Barbara Borroni (ORCID: https://orcid.org/0000-0001-9340-9814)
- Charlotte H Graafland (ORCID: https://orcid.org/0009-0000-2178-0032)
Institutions
- Karolinska University Hospital (SE)
- University of Eastern Finland (FI)
- Erasmus MC (NL)
- Karolinska Institutet (SE)
- Kuopio University Hospital (FI)
- Centro San Giovanni di Dio Fatebenefratelli (IT)
- UK Dementia Research Institute (GB)
- National Hospital for Neurology and Neurosurgery (GB)
- Consorci Institut D'Investigacions Biomediques August Pi I Sunyer (ES)
- University College London (GB)
- University of Brescia (IT)
Publication Details
- Journal
- Alzheimer s Research & Therapy
- Published
- 2025-12-13
- DOI
- https://doi.org/10.1186/s13195-025-01930-4
- Primary Topic
- Ethics in Clinical Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00