The Registry team

Jessica is the Registry Manager for the Global FKRP Registry and is employed by The John Walton Muscular Dystrophy Research Centre, Newcastle University, UK. Shee also manages the Global Registry for COL6-related dystrophies.

Marcel Heidemann is the software engineer for the Global FKRP Registry and also other patient registries for rare neuromuscular diseases which are organised by the Friedrich-Baur-Institute in Munich.

Maggie Walter is Associate Professor of Neurology at the Ludwig-Maximilians-University of Munich. She is working at the Friedrich-Baur-Institute, the neuromuscular department of the LMU, in leading position. Her main research interests are neuromuscular diseases, mainly muscular dystrophies, myofibrillar myopathies, inflammatory myopathies and clinical trials in neuromuscular patients. She is coordinator of the German Muscular Dystrophy Network (MD-NET), funded by the Federal Ministry of Education and Research (BMBF) since 2003, and member of TREAT-NMD, an European Network of Excellence in the 6th EU frame program for translational research in neuromuscular diseases. Since 1997, she is member of the Scientific Advisory Board of the Muscular Dystrophy Association of Germany (DGM), and ad hoc reviewer for several peer-reviewed journals.

Volker Straub is the Deputy Dean, Harold Macmillan Professor of Medicine and Professor of Neuromuscular Genetics at the Institute of Translational and Clinical Research at Newcastle University, United Kingdom. He is the Director of the university's John Walton Muscular Dystrophy Research Centre and holds honorary clinical appointments with the Newcastle upon Tyne Hospitals NHS Foundation Trust and the North Tees and Hartlepool NHS Foundation Trust.

Volker was trained as a paediatric neurologist at the University of Düsseldorf and the University of Essen in Germany. He wrote his PhD thesis on Duchenne muscular dystrophy (DMD) and worked as a postdoctoral research fellow in Dr Kevin Campbell's laboratory at the Howard Hughes Medical Institute at the University of Iowa in Iowa City, Iowa, USA, on limb girdle muscular dystrophies (LGMD).

Volker has a long-standing interest in the pathogenesis of genetic muscle diseases, with research using zebrafish and mouse models. His current research also involves the application of magnetic resonance imaging, next generation sequencing and other --omics technologies for the characterization of primary neuromuscular disorders.

One of Volker's main interests in muscle diseases is around translational research. He was the co-founder of the EU FP6 funded network of excellence for genetic neuromuscular diseases, TREAT-NMD (www.treat-nmd.org), which he coordinated together with Kate Bushby. Volker is a long standing core member of the TREAT-NMD TACT committee (https://www.treat-nmd.org/what-we-do/tact/), which offers guidance on the translation and development path of therapeutics programs in rare neuromuscular diseases.

Volker is the CI/ PI for a number of natural history and interventional trials in DMD, LGMD, Pompe disease, spinal muscular atrophy and other NMDs. Volker also partners with the Broad Institute and MIT to lead the MYO-SEQ study, a pan European next generation sequencing programme targeted at patients with limb girdle weakness of unknown origin (https://myo-seq.org). Volker recently chaired the European MYO-MRI COST Action (BM1304) to develop applications of MR imaging and spectroscopy techniques in neuromuscular disease. He is part of the steering committee of the MRC Centre for neuromuscular diseases and is now President of the World Muscle Society. He is an author on >300 peer-reviewed publications.

Simone Thiele is a member of the European Network TREAT-NMD as well as the German Network MD-NET and Curator of the FKRP registry for Germany. Besides, she is involved with the patient registries for Duchenne Muscular Dystrophy and Spinal Muscular Atrophy which are organised by the Friedrich-Baur-Institute in Munich. Her other focus lies on the coordination of clinical trials.