An group of external stakeholders can act as a reliable sounding board providing valuable information regarding a wide array of expertise. At the same time, it can map external challenges for the Euro-NMD Registry Hub project, providing knowledge, network, and support regarding the project’s development and outputs.
For this reason, the Independent Advisory Committee (IAC) is created. The Euro-NMD Registry Hub IAC consists of various experts with experts on data, registries, ethics, regulatory and policy.
The task of the Independent Advisory Committee (IAC) is to evaluate the quality and functionality of the registry over the project’s life cycle. This includes education of the general concept as well as the operational delivery of the registry from the perspective of the end-users: patient, clinician, research and patient communities. IAC Members will monitor the project progress and ultimately its outcomes, to integrate data from different sources for neuromuscular patients and deliver meaningful outcomes for patients, clinicians, and research and patient communities.
The goal of the IAC is to assess the impact of the registry to facilitate clinical and research activity and propose health policy and legislative advancements to guide sustainable development and implementation in and beyond the Rare Neuromuscular European Reference Network.
Dr. Angelos Liapis
CEO of Konnekt-able Technologies Ltd. and Manager of EU Research & Innovation Development at the Decision Support Systems Laboratory of the National Technical University of Athens. He has worked as an R&D Director, senior R&D manager, active researcher and ICT specialist with experience in implementing and managing EC funded ICT projects.
Dr. Catherine Cornu
French medical Doctor. Endocrinologist by training, Catherine is working as a pharmacologist since 1990 as clinical research physician, in Lyon, France. She is since 2001 physician in the Clinical Research Centre of the Lyon University Hospital. She participated in working groups, is teacher in research diplomas and has authored or co-authored more than 70 peer reviewed publications.
Global Access Policy Leader at Roche. Labrini is passionate about exploring life sciences, and the socio-economic and policy dynamics governing the unique market of healthcare. Throughout her career she has been engaging with both the scientific and business aspects of promoting health.
Project Manager and Methodology Advisor at Hospices Civil de Lyon. Co-author of over 55 publications regarding health.
Senior Project Manager at the European Joint Program on Rare Diseases (EPJ RD) by INSERM.
Founder & CEO of Telemedicine Technologies, a French company specialized in e-health systems and delivering EDC and ePRO solutions for clinical trials.
Member of the Executive Committee of the European CRO Federation (EUCROF) and treasurer since 2014. Chairman of the international task force in charge of the development of the GDPR Code of Conduct for clinical research of EUCROF. Coordinator or scientific and technical manager of more than 20 international research and development programs in the domain of eHealth.