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.

Mission Statement

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.


Elizabeth Vroom Elizabeth Vroom - Chair of Project Ethics Council

Chair, World Duchenne Organisation (UPPMD)

Elizabeth is the president of Dutch Duchenne Parent Project and the chair of United Parent Projects Muscular Dystrophy (UPPMD).

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Annemieke Aartsma-Rus Annemieke Aartsma-Rus

Professor - Leiden University Medical Center

Dr. Annemieke Aartsma-Rus is associate professor at the Department of Human Genetics and leader of the DMD genetic therapy group. She is currently Chair of the executive committee of the TREAT-NMD alliance and is a member of the Project Ethics Council and TACT Committee.

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Alessandra Ferlini Alessandra Ferlini

Associate Professor in Medical Genetics, Director of the section of Medical Genetics - University of Ferrara

Alesandra Ferlini is a professor in medical genetics, and coordinator of the EU funded BIO-NMD project. Her experience is in genetics of muscular disorders, and leads both research and innovative molecular diagnosis projects.  Within the contxt of the EU, she is member of TREAT-NMD ethical committee, of the European NeuroMuscular Centre , and partner of the NMD-CHIP EU project.

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Agnes Herczegfalvi Agnes Herczegfalvi

Leader of Neuromuscular Diseases Centre, - National Institute of Environmental Health - NIEH

Dr. Agnes Herczegfalvi MD, PhD is a pediatric neurologist and member of the National Standardization Committee of Neurologists.

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Emma Heslop Emma Heslop

RD-Connect Project Manager - Newcastle University

Emma has been involved in RD-Connect since November 2012 and officially took up the position of Project Manager in January 2013. Within RD-Connect she is responsible for leading the strategic development and delivery of the project to ensure the deliverables and objectives are achieved. Emma is a member of the Project Ethics Council (PEC).

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Joseph Irwin Joseph Irwin

Consultant - Lakeside Regulatory Consulting Services Ltd

Joseph Irwin became a Member of Spinal Muscular Atrophy Support UK (previously The Jennifer Trust for Spinal Muscular Atrophy) after his first son Toby was diagnosed with Type I SMA. Joseph, who is a biochemist-pharmacologist with molecular biology and cell biology experience, has worked for many years in hospital based research and for the pharmaceutical industry.


Janbernd Kirschner Janbernd Kirschner

Consultant Pediatric Neurologist - University Medical Center Freiburg

Dr. Jan Kirschner is  coordinator of the Clinical Trial Coordination Centre (CTCC) based in Freiburg, Germany. Jan has been joint coordinator of the German MD-NET since 2008 and was responsible for the coordination of a large multi-centre, placebo-controlled MD-NET trial in Duchenne muscular dystrophy.

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Pauline McCormack Pauline McCormack

Research Associate - Newcastle University

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 treatment and care of neuromuscular disorders.

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Patrick Moeschen

Patient Advocate - Parent Project Muscular Dystrophy

Patrick Moeschen is a 38-year-old, full-time music teacher living in Salem, NH. Mr. Moeschen was diagnosed with Becker Muscular Dystrophy at age 12. His very serious medical condition never held him back from following one of his passions and primary interest: music. A drummer since age 10, Mr. Moeschen decided to pursue a career in music, receiving a Bachelor in Music Education from U.Mass Lowell in 1995 (Magna Cum Laude). After completing college, Mr. Moeschen took an appointment at the Woodbury Middle School in Salem, NH teaching middle school band, music appreciation and jazz ensemble. In addition to his teaching responsibilities, Mr. Moeschen conducts private music lessons in his home studio.

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Francesco Muntoni Francesco Muntoni

Director of The Dubowitz Neuromuscular Centre - University College London

Francesco Muntoni (Professor in Pediatric Neurology, FRCPCH, FMedSci) is Director of the Unit with oversight of both clinical and research activities.

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Marie-Christine Ouillade Marie-Christine Ouillade

President of SMA Europe - Association Française contre les Myopathies - AFM

Marie-Christine is the mother of a young lady affected by SMA. She is president of SMA Europe an umbrella association of SMA patients organization in Europe  She is also a member of AFM Board of Directors, and GENETHON board of directors and the TREAT-NMD Project Ethics Council.

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Jes Rahbek Jes Rahbek

The Rehabilitation Centre for Neuromuscular Diseases

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 committee and 3) international relations committee.

He represents Muskelsvindfonden in the ENMC where he has just been elected Chairman of the Executive Committee.
Jes works as Chief Medical Officer and Director of the Danish National Rehabilitation Centre for Neuromuscular Diseases and is an associated partner in CARE-NMD which is a DMD project under TREAT-NMD.


Christoph Rehmann-Sutter Christoph Rehmann-Sutter

Professor of Theory and Ethics in the Biosciences - University of Lübeck

Christoph is experienced in the field of bioethics and is a member of the TREAT-NMD Project Ethics Council.

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Françoise Rouault Françoise Rouault

International Scientific Affairs - Association Française contre les Myopathies - AFM

Dr. Francoise Rouault joined the scientific direction of the AFM in October 2009 as International Scientific Affairs Manager.


Thomas Sejersen Thomas Sejersen

Associate Professor, Astrid Lindgrens Barnsjukhus - Karolinska Institute

Thomas Sejersen (MD, PhD): Head of clinical and research team for neuromuscular disorders in childhood. He is involved in ENMC workshops on DMD and desmin-related myopathies.

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Simon Woods Simon Woods

Bioethicist - Newcastle University

Dr Simon Woods 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.

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12 Apr 2017