Real4Reg aims to incorporate evidence generated from real-world data (RWD) in optimising and supporting the work of regulatory authorities and health technology assessment (HTA).
The results’ dissemination with multiple stakeholders is one of the project goals. Therefore, on April 13th, at 15:00-16:30 CET, Real4Reg will present an online Patients Workshop, under the theme “Real-World Data and Patients: Breaking the Ice”.
This event, dedicated to patients and general public, will focus on how patients view RWD, regarding its importance, future impact and willingness to share it with researchers in healthcare context. An explanation on how RWD can be used in multiple areas, namely in academic research, public health research and monitoring, regulatory and other government agencies and private sector research, will be provided by Martin Russek (BfArM).
In addition, the platform PatientsLikeMe, where patients can share their health-related data and keep in touch with people under the same circumstances, will be presented by Erlyn Macarayan. Some of the explored topics will be the different sections within the website that patients can use and the patient’s reported benefits of being part of an initiative like this.
Each presentation will be followed by a discussion, moderated by Rebecca Moore (EIWH), with Margarida Oliveira (INFARMED, I.P.) and Dirk De Valck (EUpALS) participation. Given their expertise, they will present their perspectives (regulatory and patients organisation, respectively) about the topics addressed and on how patients RWD can be helpful and useful for regulatory decision-making and HTA.
At the end of the event, the audience will be able to ask questions, provide input, and share experiences.
The registration is already open. We are looking forward to receiving you!
Agenda
13th April 2026, 15:00-16:30 CET, Online
15:00-15:05 Introduction
15:05-15:35 Real-World Data (RWD): Patient Perspectives and Applications in Healthcare
- Presentation: Martin Russek (BfArM) – 20 min;
- Discussion: Margarida Oliveira (INFARMED, I.P.) and Dirk de Valck (EUpALS), Moderator: Rebecca Moore (EIWH) – 10 min
15:35-16:05 PatientsLikeMe: A Platform for RWD Sharing and Patients Engagement
- Presentation: Erlyn Macarayan (PatientsLikeMe) – 20 min;
- Discussion: Margarida Oliveira (INFARMED, I.P.) and Dirk de Valck (EUpALS), Moderator: Rebecca Moore (EIWH) – 10 min
16:05-16:25 Q&A
16:25-16:30 Closing
