The Global FKRP Registry is operated by the Friedrich-Baur-Institut, Klinikum der Universität München (University of Munich hospital). Data is stored at the Klinikum der Universität München under the responsibility of Prof. Maggie Walter. Data access is through defined personnel at both Klinikum der Universität München and Newcastle University.
Head of the Global FKRP Registry (international)
Professor Volker Straub is an executive board member of the World Muscle Society, executive board member of the Institute of Genetic Medicine at Newcastle University and was joint co-ordinator of TREAT-NMD (now TREAT-NMD Alliance) until 2011. 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.
Head of the Global FKRP Registry (Germany)
If you would like to speak with someone about country specific issues relating to your health or the registry then please get in touch with your national contact.
Agata Robertson (Global)
Agata is the coordinator of the Global FKRP Registry. She is based in Newcastle and works alongside the TREAT-NMD Alliance, the LGMD2I Research Fund and Cure CMD, who all support the Registry. Please contact Agata if you have any questions regarding the Registry.
Simone Thiele (Germany)
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.