Project ethics council – PEC
The Project Ethics Council identifies and examines ethical and social aspects of research taking place in the context of TREAT-NMD.
The PEC is a voluntary multidisciplinary group comprised of clinicians, scientists, parents, ethicists and legal academics, patients and representatives of parent organisations. The PEC works in a collegiate, collaborative and inclusive manner to provide ethical guidance and balanced opinion in order to enhance the excellence TREAT-NMD aspires to.
Membership of the PEC is voluntary and drawn from the initial TREAT-NMD partner network, interest groups and invited external members. Members with special expertise, patient representatives, and other relevant groups may be co-opted as necessary.
Alesandra Ferlini is a professor in medical genetics, director of the Medical Genetics section at the University of Ferrara (Italy), and coordinator of the EU funded BIO-NMD project. Her experience …
Dr. Jan Kirschner is coordinator of the TREAT-NMD Clinical Trial Coordination Centre (CTCC) based in Freiburg, Germany. Jan has been joint coordinator of the German network for neuromuscular disorders MD-NET …
Pauline McCormack works as a Research Associate with the Policy, Ethics and Life Sciences group at Newcastle University. Pauline is looking at the social and ethical issues associated with the …
Marie-Christine is the mother of a girl affected by SMA. She is a member of AFM Board of Directors, AFM international committee and TREAT-NMD Project Ethics Council. She is also …
Jes is a specialist in neuromuscular rehabilitation and also a volunteer in Muskelsvindfonden, the Danish patient organization for NMD. Additionally Jes is Chairman of Muskelsvindfonden’s 1) scientific committee, 2) ethical …
Thomas Sejersen holds positions as Professor in Neuropediatrics at the Department of Women’s and Children’s Health of Karolinska Institute and consultant paediatrician at the Astrid Lindgrens Barnsjukhus (Stockholm, Sweden).
Elizabeth Vroom is founder and president of the Duchenne Parent Project Netherlands since 1995 and Chair and co-founder of the World Duchenne Organisation (UPPMD). She is the mother of an …