Stefano Benvenuti - Informed consent and the respect of patient's will
Автор: Fondation Maladies Rares
Загружено: 2025-09-04
Просмотров: 10
#InformedConsent #PatientCentricity #RareDiseases #DataGovernance #MedicalResearch #PatientRights #EthicalResearch #ejprd
Stefano Benvenuti, Head of Public Affairs and Market Access at Fondazione Telethon (Italy), discusses how informed consent can ensure that the wishes of patients with rare diseases and their caregivers are respected in the use of clinical data and biological samples. The talk highlights the importance of patient-centered approaches, data governance, and ethical data sharing to build trust and involve patients in research decisions.
This video is released under the CC BY-NC-SA 4.0 license and comes from the MOOC ‘Innovative Therapies and Personalised Medicine for Rare Diseases’, (https://www.futurelearn.com/courses/i...) developed as part of the European Joint Programme on Rare Diseases (EJP RD) by Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF), ERN TransplantChild and Fondation Maladies Rares.
More on EJPRD: https://www.ejprarediseases.org
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