Registry-Day | Advancing patient care and research through real-world data

Last updated on 15-3-2024 by Cassandre Dugailliez

Fri, 17/05/2024 - 09:00 to 16:00


You are cordially invited to the Sciensano symposium on advancing care and research through real-world data.

This symposium provides an overview of the contributions and advancements of the Sciensano rare disease and diabetes registries. It also aims to evaluate the evolutions in the collection of real-world data  and how they are used to improve quality of care and health outcomes in Belgium.

In the morning, Sciensano will present the output of the registries for rare diseases, diabetes, cystic fibrosis and neuromuscular diseases.

In the afternoon, current challenges will be addressed, like disease coding, the use of real-world data in clinical trials and the role of both data providers and patients in this process.


Register now!


9:00 Opening | Dr. Marleen Louagie, RIZIV

9:20 General introduction to registries | Marjan Cosyns, Sciensano

9:50 Central Registry Rare Diseases (CRRD) | Katrien Van Der Kelen, Sciensano

10:20 Belgian Neuromuscular Disease  Registry | Marlène Jagut, Sciensano

10:50-11:10 Coffee

11:10 Belgian Cystic Fibrosis Registry | Géraldine Danneau & Simeon Situma Wanyama, Sciensano

11:40 Diabetes | An-Sofie Vanherwegen/Astrid Lavens, Sciensano

12:10-13:00 Lunch             

13:00 OrphaNet | Annabelle Calomme, Sciensano

13:25 SnomedCT | speaker to be confirmed

13:50 Data protection and GDPR | Mélissa Van Bossuyt, Sciensano

14:15  Data provider perspective | speaker to be confirmed

14:40-15:00 Coffee

15:00 RWE in clinical trials | Robbe Saesen, Sciensano

15:25 RWE for reimbursement files | Mattias Neyt, KCE

15:50 Patient experiences and expectations | speaker to be confirmed

16:15-16:30 Closing | Dr Karin De Ridder, Sciensano

This event contributes to Sciensano's activities in the field of: 


1 Rue Ernest Blerot
Room Storck
1070 Anderlecht


Free but registration is mandatory


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