The Real4Reg project is dedicated to fostering active engagement with key stakeholders, including experts in real-world data and medicines, as well as the public and patients. We are excited to announce two workshops scheduled for October 14. The final programs and speakers will be announced in the coming weeks.
Workshop 1: Insights into Stakeholder Needs
This specialized workshop will delve into stakeholder requirements and opinions, exploring how these insights can shape effective training programs. The findings from the recent Real4Reg survey will also be presented.
Program Highlights:
- Real4Reg Survey Findings Presentation: Results of the Real4Reg survey, offering a comprehensive overview of stakeholders’ needs, knowledge, and capacities regarding real-world data (RWD) and evidence (RWE).
- Roundtable Discussion: Discussions among various stakeholder representatives on how the Real4Reg survey findings can enhance the training programs we aim to develop.
Registration for experts workshop
Agenda
14th October 2024, 09:30 – 11:00 CEST, online
09:30-09:35 – Introduction
09:35-09:50 – Keynote Presentation – EMA insights on RWE and training needs
Luca Giraldi (European Medicines Agency)
09:50-10:00 – Real4Reg survey results
Lucas Depner (German Center for Neurodegenerative Diseases)
10:00-10:55 – Roundtable session – discussion of the Real4Reg survey results and how can they inform training programs
Moderation: Vera Ehrenstein (Aarhus University)
Participants:
- Luca Giraldi (European Medicines Agency)
- Niklas Hedberg (Heads of HTA Agencies Group)
- Gianmario Candore (Bayer)
- Carla Torre (Faculty of Pharmacy of the University of Lisbon)
- Paulo Gonçalves (RD-Portugal)
10:55-11:00 – Closing
Workshop 2: Demystifying Real-World Data – Insights for Patients
On October 14, the Real4Reg inaugural workshop designed specifically for patients and lay public, “Demystifying Real-World Data – Insights for Patients” aims to bring clarity to the world of real-world data (RWD) and its impact on healthcare.
Real-World Data (RWD) refers to the information collected from everyday healthcare practices outside of controlled clinical trials. This data comes from various sources, such as electronic health records, insurance claims, and patient registries. By analysing RWD, researchers and healthcare professionals can gain valuable insights into the effectiveness and safety of treatments, as well as understand patient outcomes in real-world settings.
Program Highlights:
- Introduction to Real-World Data: What RWD is and how it is used in healthcare.
- Overview of the Real4Reg Project: Our mission, goals, and the latest developments.
- Data Privacy and Public Concerns: Informative session addressing data privacy and other relevant public concerns.
Registration for patients workshop
Agenda
14th October 2024, 11:30 – 13:00 CEST, online
11:30-11:35 – Introduction
11:35-12:00 – Session 1: Understanding real-world data (RWD) and its potential
- Presentation: RWD and its uses – Nicolas Thurin (University of Bordeaux)
- Presentation: Real4Reg – Britta Haenisch (BfArM)
12:00-12:55 Session 2: perspectives of patients regarding data privacy, security and ethical considerations
- Presentation: Data privacy – Chloé Antoine (University of Namur, Belgium)
- Roundtable with patient representatives;
Moderation: Rebecca Moore (European Institute of Women’s Health) - Participants:
- Antonella Cardore (Cancer Patients Europe)
- Elsa Frazão Mateus (EUPATI)
- Ywan Dierick (EUpALS)
12:55-13:00 Closing
