Registry for Patients With Lipodystrophy

Recruiting now

Conditions studied: Lipodystrophy Acquired, Lipodystrophy Congenital

In brief

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.

Key facts

Study ID

NCT03553420

Run by

University of Ulm

People needed

5000

Starts

2017-12-16

Expected to finish

2068-01-01

Last updated by the study team

2025-12-02

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• lipodystrophy

You may not qualify if…

• lipodystrophy due to anti-retroviral drugs

Where it is running

• Medical University of Vienna — Vienna, Austria (enrolling)
• Lille University — Lille, France (enrolling)
• AP-HP Nord Université de Paris, Hôpital Universitaire Robert-Debré — Paris, France (enrolling)
• Pierre et Marie Curie School of Medicine, Sorbonne University — Paris, France (enrolling)
• Kinder-und Jugendkrankenhaus AUF DER BULT — Hanover, Germany (enrolling)
• Department of Internal Medicine (Endocrinology and Nephrology), University of Leipzig — Leipzig, Germany (enrolling)
• Med. Klinik B für Gastroenterologie und Hepatologie, Universitätsklinikum Münster — Münster, Germany (enrolling)
• Dept for Pediatrics and Adolescent Medicine, University of Ulm: Interdisciplinary obesity clinic — Ulm, Germany (enrolling)
• National and Kapodistrian University of Athens — Athens, Greece (enrolling)
• Second Department of Internal Medicine, Medical School, National and Kapodistrian University of Athens, Attikon University Hospital — Athens, Greece (enrolling)
• University of Szeged, Department of Internal Medicine — Szeged, Hungary (enrolling)
• Endocrinology Unit, Department of Clinical and Medical science, S. Orsola-Malpighi Hospital , University of Bologna — Bologna, Italy (enrolling)
• Policlinic University Hospital of Milan — Milan, Italy (enrolling)
• Universita del piemonte Orientale — Novara, Italy (enrolling)
• Palermo University — Palermo, Italy (enrolling)
• Endocrine Unit of University Hospital of Pisa — Pisa, Italy (enrolling)
• Tor Vergata University - Policlinico of Tor Vergata — Roma, Italy (enrolling)
• Academic Medical Center, University of Amsterdam — Amsterdam, Netherlands (enrolling)
• Abel Salazar Biomedical Sciences Institute - University of Porto — Porto, Portugal (enrolling)
• C. I. Parhon National Institute of Endocrinology, Bucharest, Romania — Bucharest, Romania (enrolling)
• Endocrinology Research Centre — Moscow, Russia (enrolling)
• University Medical Center Ljubljana - Clinical Institute of Medical Genetics — Ljubljana, Slovenia (enrolling)
• Santiago de Compostela University — Santiago de Compostela, Spain (enrolling)
• Stoffwechselzentrum friendlydocs — Sankt Gallen, Switzerland (enrolling)
• National Taiwan University Hospital — Taipei, Taiwan (enrolling)

Full record on ClinicalTrials.gov

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