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

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.

Registration 

Registrations are closed.

Program

8:30 Registration and coffee

9:00 Opening | Dr. Marleen Louagie, RIZIV & Robrecht De Schreye, Sciensano

9:25  General introduction to registries | Marjan Cosyns, Sciensano

Session 1 | Update from the registries (Part 1)

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

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

10:50-11:10 Coffee

Session 2 | Update from the registries (Part 2)

11:10  The Belgian Cystic Fibrosis Registry (BCFR) | Simeon Situma Wanyama, Sciensano

11:35  IQED-Foot and IQECAD: initiatives for quality promotion and epidemiology in diabetes | Suchsia Chao, Sciensano

12:10-13:00 Lunch    

Session 3 | Challenges in registry data collections          

13:00  Belgian contribution to Orphanet, the international reference portal on rare diseases and orphan drugs | Annabelle Calomme, Sciensano

13:25  Standard terminology — the way to information driven healthcare | David Op De Beeck, SPF Santé Public/FOD Volksgezondheid

13:50  reInformed consent: yay or nay? | Mélissa Van Bossuyt, Sciensano

14:15 Registry data provider perspective | Dr. Thierry Mouraux, Université Catholique de Louvain — CHU UCL Namur

14:40-15:00 Coffee

Session 4 | Future proof registry data collections

15:00  Combining the strenghts of RCTs and RWD — the best of both worlds | Robbe Saesen, Sciensano

15:25  Combining strengths of RCTs and RWD — some practical examples | Mattias Neyt, KCE

15:50  Registries — Patient experiences and expectations | Eva Schoeters, RadiOrg

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