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Natural history study journey in europe

Journey is a clinical outcomes assessment study, also referred to as a natural history study. The study does not involve the use of an investigational study drug but rather studies the natural progression of the disease and how it affects the muscles, lungs, and heart in individuals receiving the current standard of care with their doctor/care team. The study is designed to collect medical history, clinical tests, quality of life questionnaires, and functional assessments on individuals affected with Sarcoglycan Limb-girdle muscular dystrophy.
 
Four centres are now open in Europe for the Natural history study  JOURNEY:
 
GERMANY
Zentrum für Kinderheilkunde und Jugendmedizin Uniklinikum Giessen Marburg (UKGM), Standort Giessen
Giessen, Hessen, Germany, 35392
Contact +49 (0)641-985-56843 This email address is being protected from spambots. You need JavaScript enabled to view it.   
Principal Investigator: Andreas Hahn, MD       
 
ITALY
Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico
Milan, Italy, 20122
Contact 39-02-55033802 This email address is being protected from spambots. You need JavaScript enabled to view it.   
Principal Investigator: Giacomo Comi, MD
 
 
TURKEY
 
Lokman Hekim Etlik Hastanesi
Ankara, Turkey, 06100
Contact 90 532 234 12 26 This email address is being protected from spambots. You need JavaScript enabled to view it.   
Principal Investigator: Haluk Topaloglu, Prof         
 
 
UNITED KINGDOM
 
Institute of Genetic Medicine, International Centre for Life
Newcastle Upon Tyne, United Kingdom, NE1 3BZ
Contact 0191 241 8652 This email address is being protected from spambots. You need JavaScript enabled to view it.   
Principal Investigator: Jordi Diaz-Manera, MD, PhD