Fri, 17/05/2024 - 09:00 to 16:00
Description
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
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 Belgian Cystic Fibrosis Registry | Simeon Situma Wanyama, Sciensano
11:35 IQED, IQED-Foot and IQECAD: initiatives for quality promotion and epidemiology in diabetesiabetes | 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 Informed consent: yay or nay? | Mélissa Van Bossuyt, Sciensano
14:15 Registry data from a 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 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
