Registry for Patients With Lipodystrophy

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.

NCT Number	NCT03553420
Lead Sponsor	University of Ulm Collaborators: Sorbonne University, University Hospital, Lille, University of Cambridge, Endocrinology Research Centre, Moscow, University of Leipzig, University of Amsterdam, Dokuz Eylul University, IRCCS Azienda Ospedaliero-Universitaria di Bologna, University of Rome Tor Vergata, University of Pisa, University of Santiago de Compostela, Università degli Studi del Piemonte Orientale Amedeo Avogadro, University Hospital Muenster, Szeged University, Centro Hospitalar do Porto, University Medical Centre Ljubljana, Medical University of Vienna, National and Kapodistrian University of Athens, Stoffwechselzentrum St. Gallen, National Taiwan University Hospital, Marmara University, University of Palermo, Attikon Hospital, Kinderkrankenhaus auf der Bult, Hopital Universitaire Robert-Debre, University of Milan, C.I. Parhon National Institute of Endocrinology
Conditions	Lipodystrophy Acquired, Lipodystrophy Congenital
Enrollment	5,000 participants
Start Date	2017-12-16
Primary Completion	2068-01 (estimated)
Study Completion	2068-01 (estimated)
Updated on ClinicalTrials.gov	2025-12-02