The ERN EURO-NMD Registry Hub Project: Sept 3rd – 16:00 – 17:00 CEST

…TIMESLOT: Tuesday 3 sept. 2024 16:00 CEST

…THEME: The ERN EURO-NMD Registry Hub Project

…PRESENTERS: Nawel Lalout (Radboudumc, NL) & Dagmar Wandrei (Medical Center – University of Freiburg, DE)

Nawel Lalout is Coordinator ERN Registries for Patients with Rare Diseases at Radboudumc in the Netherlands. Her focus is to apply innovative solutions that lower the barriers to data entry from patient-led or clinical registries into their affiliated ERN Registries.
Thanks to her FAIR expertise, she coordinates the FAIRification efforts on behalf of ERN EURO-NMD Registry Hub with other neuromuscular diseases registries or databases.
To upscale the FAIR efforts for the Duchenne and Becker Muscular Dystrophy, Nawel was honoured a Research Grant by the Dutch Patient Organisation, the Duchenne Parent Project to explore how to “Create research impact for Duchenne with the FAIR Data Principles and Interoperability of Rare Neuromuscular Disease Patient Registries.”
Nawel has extensive experience in international development and worked in a variety of sectors including pharmaceutical, non-for-profit, Life Sciences and high technology. She holds a Masters degree in General Management from the University of West London.

Dagmar Wandrei is an IT specialist at the Clinical Trials Unit of the Medical Center – University of Freiburg, combining her technical skills with a background in sociology of health. Since 2020, she worked as a data manager in the development of the EURO-NMD Registry, a project dedicated to advancing research into rare diseases. Her primary motivation is to improve patient care through innovative data solutions. As part of the technical implementation team, she sees the establishment of the EURO-NMD Registry Hub as a significant opportunity to develop a FAIR (Findable, Accessible, Interoperable, and Reusable) infrastructure, ensuring high quality and accessible data for researchers, healthcare professionals and patients.