RecruitingNCT03553420

Registry for Patients With Lipodystrophy

Osse Registry for Patients With Lipodystrophy Run by the European Consortium of Lipodystrophies (ECLip)

Sponsor

University of Ulm

Enrollment

5,000 participants

Start Date

Dec 16, 2017

Study Type

OBSERVATIONAL

Conditions

Lipodystrophy Acquired Lipodystrophy Congenital

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.

Eligibility

Inclusion Criteria1

lipodystrophy

Exclusion Criteria1

lipodystrophy due to anti-retroviral drugs

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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

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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

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NCT03553420