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Registry for Patients With Lipodystrophy
Sponsor: University of Ulm
Summary
Given the lack of knowledge on lipodystrophies, the medical and social responsibility for the persons affected by it calls for the monitoring of the progression over long periods of time. Sensible clinical and basic research into rare diseases such as lipodystrophy is only possible in multi-location networks with sufficient case numbers. Also, reliable information on the incidence of certain manifestation patterns, health status, etc. is of utmost importance for health care and health policy in this rare disease. Therefore, the European Consortium of Lipodystrophies (ECLip), an association of European experts on lipodystrophy, has launched a registry (OSSE) for lipodystrophies which is committed to help to improve the research conditions by consolidating this kind of information in a registry.
Official title: Osse Registry for Patients With Lipodystrophy Run by the European Consortium of Lipodystrophies (ECLip)
Key Details
Gender
All
Age Range
Any - Any
Study Type
OBSERVATIONAL
Enrollment
5000
Start Date
2017-12-16
Completion Date
2068-01
Last Updated
2025-12-02
Healthy Volunteers
No
Locations (28)
Medical University of Vienna
Vienna, Austria
Lille University
Lille, France
AP-HP Nord Université de Paris, Hôpital Universitaire Robert-Debré
Paris, France
Pierre et Marie Curie School of Medicine, Sorbonne University
Paris, France
Kinder-und Jugendkrankenhaus AUF DER BULT
Hanover, Germany
Department of Internal Medicine (Endocrinology and Nephrology), University of Leipzig
Leipzig, Germany
Med. Klinik B für Gastroenterologie und Hepatologie, Universitätsklinikum Münster
Münster, Germany
Dept for Pediatrics and Adolescent Medicine, University of Ulm: Interdisciplinary obesity clinic
Ulm, Germany
National and Kapodistrian University of Athens
Athens, Greece
Second Department of Internal Medicine, Medical School, National and Kapodistrian University of Athens, Attikon University Hospital
Athens, Greece
University of Szeged, Department of Internal Medicine
Szeged, Hungary
Endocrinology Unit, Department of Clinical and Medical science, S. Orsola-Malpighi Hospital , University of Bologna
Bologna, Italy
Policlinic University Hospital of Milan
Milan, Italy
Universita del piemonte Orientale
Novara, Italy
Palermo University
Palermo, Italy
Endocrine Unit of University Hospital of Pisa
Pisa, Italy
Tor Vergata University - Policlinico of Tor Vergata
Roma, Italy
Academic Medical Center, University of Amsterdam
Amsterdam, Netherlands
Abel Salazar Biomedical Sciences Institute - University of Porto
Porto, Portugal
C. I. Parhon National Institute of Endocrinology, Bucharest, Romania
Bucharest, Romania
Endocrinology Research Centre
Moscow, Russia
University Medical Center Ljubljana - Clinical Institute of Medical Genetics
Ljubljana, Slovenia
Santiago de Compostela University
Santiago de Compostela, Spain
Stoffwechselzentrum friendlydocs
Sankt Gallen, Switzerland
National Taiwan University Hospital
Taipei, Taiwan
Marmara University, Pediatric Endocrinology and Diabetes
Istanbul, Turkey (Türkiye)
Dokuz Eylul University School of Medicine
Izmir, Turkey (Türkiye)
University of Cambridge Metabolic Research Laboratories
Cambridge, United Kingdom