This project has received funding from the Innovative Medicines Initiative
Veronica Popa, Digital Patient Engagement Manager at EURORDIS Rare Disease Europe, explores patients' views on the return and reuse of clinical trial data, explaining how it impacts their lives and why it is a priority to respect their needs and wishes.
Johanna MC Blom, deputy coordinator of FACILITATE, traces the path of the project by explaining its rationale, analysing the context in which it was born, anticipating the concepts of ethical and legal frameworks, and emphasizing the benefits to stakeholders and...
Johanna MC Blom, Professor of Psychobiology Paediatric and Behavioural Neuroscience at the University of Modena and Reggio Emilia and deputy coordinator of FACILITATE, introduces the project and its profound impact in the transformative world of clinical trial data...
Friday, 19 April 20242:00 to 3:30 pm CET Increasing stakeholder engagement and empowering participants to FACILITATE the effective return of clinical trial data Join us in the vision of this insightful overview and roundtable discussion of the FACILITATE...
The return of individual data to clinical trial participants as a means of patient empowerment was once again featured at the annual Patients as Partners in Clinical Research US Conference, which took place in Philadelphia, Pa, on March 20-22nd. The theme of this...
Maximizing the societal benefit and lasting impact of clinical trials. Increasing stakeholder engagement and empowering participants to FACILITATE the effective return of clinical trial data Event Date: Friday, 19 April 2024Event Time: 2:00 to 3:30 pm CET REGISTER...
On November 29, at the Clinical Trials Europe meeting held in Barcelona, FACILITATE made a significant contribution to this important annual gathering, which for two days becomes a nexus for patients, health authorities, ethics committees, pharmaceutical companies,...
Event Date: Thursday, 28 March 2024Event Time: 9:00 to 10:00 a.m. EST Join us for an overview of TransCelerate’s Individual Participant Data Return (iPDR) Package, a comprehensive set of materials that provide general considerations to enable data return to...
DOWNLOAD FULL NEWSLETTER PDF
KEYWORDS: Governance; digital health data; preferences; Europe; discrete choice experiment; data use; data sharing; secondary use of data
KEYWORDS: health data-sharing, clinical trials, decision-making, informed consent, social alliance
In the last two months, FACILITATE researchers of Workpackage 3 have organized and managed three different consultations with patients and experts about granularity of choice in Secondary Use of Data in the clinical trial context.The first consultation – entitled...
