Project Ethics Board
The Project Ethics Board (PEB) is composed of internal and external experts involved in the field of bioethics. The PEB will benefit of the expertise of the TREAT-NMD Network of Excellence Project Ethics Council (PEC).
Members of the PEC will be invited to participate in the BIO-NMD project’s Steering Committee meetings. The role of the Ethics Board will be to review the ethical aspects of the research activities carried out in the project. The Ethics Board will be represented at SC meetings and advise on research according to European BIO-NMD – Proposal 241665 – 2nd October 2009 ethical guidelines. The Ethics Board will also contribute to ethical standards, shall any be developed within the project.
Simon Woods - Chair is a bioethicist at the Policy, Ethics and Life Sciences Research Centre (PEALS). He is a member of a number of research and clinical ethics committees and has an active international research profile in medical ethics and ethics related to developments in the life sciences. He has published widely in the field and provides professional development training to health professionals and members of ethics committees. Within the TREAT-NMD project Simon chairs the Project Ethics Council and is a leader of the ethics workpackage which complements his role within the BIO-NMD project.
Jes Christian Rahbek, MD: Chief Medical Officer, Director, for Rehabiliterings Center for Muskelsvind (RCfM) since 1992.
RCfM has 25 years of experience in following disease progression people with neuromuscular diseases (NMD). All patients with NMD are observed in their home and RCfM’s consultants are key people in the coordination of a joint rehabilitation effort among a number of specialists and sectors.
Jes has been a member of the board of directors at ENMC since 1996. He is also a member of the Project Ethics Council of TREAT-NMD. Role: National coordinator of CARE-NMD, specialist for impact of care on QoL.
Volker Straub - Professor of Neuromuscular Genetics -
Volker Straub is joint co-ordinator of TREAT-NMD, executive board member of the World Muscle Society and executive board member of the Institute of Human Genetics at Newcastle University.
Together with Hanns Lochmüller, Volker was responsible for setting up the German muscular dystrophy network, MD-NET, of which he was joint coordinator until 2008. Within the neuromuscular research group at Newcastle, Volker has a long-standing interest in the pathogenesis of muscular dystrophies, with research using zebrafish and mouse models. His current research also involves the application of contrast enhanced MRI.