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DTSTART;TZID=Europe/Vienna:20261113T100000
DTEND;TZID=Europe/Vienna:20261113T113000
DTSTAMP:20261103T101930Z
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UID:89483-1794564000-1794569400@www.bbmri-eric.eu
SUMMARY:ELSI Dialogues - Beyond the Signature: Rethinking Consent in Biobanking
DESCRIPTION:Consent is a cornerstone of responsible biobanking and biomedical research. However\, obtaining consent for the collection\, storage\, sharing and use of human biological samples and associated data raises complex legal\, ethical and practical questions. What constitutes valid consent in the context of biobanking? How should consent address future and unforeseen research uses? What are the implications of the General Data Protection Regulation (GDPR)\, and how can legal requirements be reconciled with ethical principles and the expectations of patients and research participants? Is there a difference between GDPR consent and consent to participate to research? How many types of consent exist and what are the most suitable ones for the biobanking context? \nThe webinar will explore the fundamental principles of consent and the key legal\, ethical and practical challenges associated with it. The discussion will bring together two experts with backgrounds in law and ethics\, alongside an experienced patient representative\, who will offer a patient perspective on the challenges of obtaining and providing informed consent. The webinar will feature an interactive discussion\, providing an opportunity for patients\, patient and public representatives\, and other audience members to raise questions\, share concerns\, and engage with the speakers. \nRegister here. \n  \nModerator: Dr. Ilaria Colussi (BBMRI-ERIC) \nSpeakers:  \n\n Wenkai Li (PhD researcher at the Health and Ageing Law Lab (HALL)\, Law Science Technology and Society Research Group (LSTS) of Vrije Universiteit Brussel (VUB)\, Belgium)\n Dr. Deborah Mascalzoni (Group Leader of the ELSI Research Group at the Institute for Biomedicine (IfB) of Eurac Research in Bolzano\, Italy\, and Associate Professor of Biomedical Ethics at the Centre for Research Ethics and Bioethics (CRB) at Uppsala University\, Sweden)\n Olga Valciņa (founder and CEO of the Melanoma Patient Network of Latvia\, “Step Ahead of Melanoma”\, and founder and board member of the Latvian Association of Oncology Patient Organisations\, “OncoAlliance”)\n\nThis webinar is offered by the BBMRI-ERIC ELSI Services & Research Department and Stakeholder Forum Patients and Citizens Pillar.
URL:https://www.bbmri-eric.eu/events/elsi-dialogues-beyond-the-signature-rethinking-consent-in-biobanking/
CATEGORIES:Academy,BBMRI-ERIC,Webinar
ATTACH;FMTTYPE=image/png:https://www.bbmri-eric.eu/wp-content/uploads/2026/10/Consent_webinar_Nov2026_leaflet-1-e1792661637774.png
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DTSTART;TZID=Europe/Vienna:20261119T150000
DTEND;TZID=Europe/Vienna:20261119T160000
DTSTAMP:20261105T090044Z
CREATED:20261103T132322Z
LAST-MODIFIED:20261105T090044Z
UID:89609-1795100400-1795104000@www.bbmri-eric.eu
SUMMARY:Data quality in biobanks: The Federated Data Quality Framework
DESCRIPTION:Register here\nPre-analytical sample quality is an established topic in biobanking – the previous BBMRI-ERIC Academy webinar “High-Quality Samples and What About the Data?” raised the question that ultimately determines the usability of any collection: the quality of the data describing those samples. Data quality is frequently the bottleneck in discovery\, sharing and reuse. \nThis follow-up webinar introduces the Federated Data Quality Framework (FDQF)\, a tool developed by BBMRI-ERIC and BBMRI.cz teams that aims to assess biobank data quality continuously\, comparably\, and without centralising the data. The approach is federated: checks run locally at each node\, and only aggregated quality indicators are passed to the central level. Neither the data nor individual donor records leave the institution — essential for GDPR compliance and for trust between nodes. \nThe webinar covers the principles and architecture of FDQF\, the catalogue of checks and data quality dimensions (completeness\, consistency\, validity\, uniqueness\, timeliness)\, the form of the outputs — quality indicators\, dashboards and comparison of collections over time — and practical experience from deployment in the BBMRI.cz environment. It will also address what node onboarding involves and how to embed data quality into routine biobank operations. \nSpeaker: Radovan Tomášik — developer of the FDQF tool\, BBMRI-ERIC HQ/BBMRI.cz \nHost: Sten Hanke — BBMRI-ERIC HQ \nAfter watching the webinar\, participants will have acquired the following knowledge: \n\nhow federated data quality assessment works and why it matters\nwhich quality dimensions can be monitored and how to interpret the indicators\nwhat node onboarding involves and its operational requirements
URL:https://www.bbmri-eric.eu/events/data-quality-in-biobanks-the-federated-data-quality-framework/
CATEGORIES:Academy,Webinar
ATTACH;FMTTYPE=image/png:https://www.bbmri-eric.eu/wp-content/uploads/2026/11/Data-Quality-in-Biobanks_-The-Federated-Data-Quality-Framework-e1793712590842.png
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BEGIN:VEVENT
DTSTART;TZID=Europe/Vienna:20261123T100000
DTEND;TZID=Europe/Vienna:20261123T110000
DTSTAMP:20261110T103545Z
CREATED:20261110T103545Z
LAST-MODIFIED:20261110T103545Z
UID:89705-1795428000-1795431600@www.bbmri-eric.eu
SUMMARY:ELSI Dialogues - From Participation to Partnership: Patient Engagement in Cancer Care and Research in Algeria and India
DESCRIPTION:Meaningful patient engagement is increasingly recognised as essential to making cancer care and research more responsive to the needs\, experiences and priorities of people affected by cancer. However\, translating this principle into practice requires trust\, inclusive approaches and sustained collaboration between patients\, healthcare professionals\, researchers\, and cancer organisations. \nThis webinar will explore practical experiences of patient engagement in Algeria and India\, thus discussing how patients and caregivers are involved in cancer care and what approaches can help build meaningful partnerships and foster trust between patients and healthcare professionals. Particular attention will be given to the inclusion of people who may be under-represented in these processes\, including those living in rural areas\, people with limited health literacy and those facing difficulties accessing specialist cancer care. \nThe purpose is to move from considering patients as mere participants to establishing patient partnerships\, in which their experiences help shape a real patient-centred cancer care and research. \n  \n23 November 2026\, h 10-11 CEST \nRegister online here. \n  \nModerators: Dr. Ilaria Colussi (BBMRI-ERIC) and Dr. Zisis Kozlakidis (IARC/WHO) \nSpeakers:  \n\nDr. Naila Saadia Hamitou\, medical intern and public health advocate from Algeria\, member of the Public Relations Team at the Hope Dose Foundation\, Algiers\, Algeria\nDr. Shubha Maudgal\, executive director\, Cancer Patients Aid Association\, Mumbai\, India\n\n  \nThis webinar is offered by ELSI Services & Research Department at BBMRI-ERIC. \n  \nRegister online here.
URL:https://www.bbmri-eric.eu/events/elsi-dialogues-from-participation-to-partnership-patient-engagement-in-cancer-care-and-research-in-algeria-and-india/
CATEGORIES:Academy,BBMRI-ERIC,Webinar
ATTACH;FMTTYPE=image/png:https://www.bbmri-eric.eu/wp-content/uploads/2026/11/ELSI_Dialogues_23Nov2026_leaflet-e1794222368645.png
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