Registry for Patients With Lipodystrophy

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.

Conditions

• Lipodystrophy Acquired
• Lipodystrophy Congenital

Sponsors & Collaborators

• Sorbonne University

  collaborator OTHER

• University Hospital, Lille

  collaborator OTHER

• University of Cambridge

  collaborator OTHER

• Endocrinology Research Centre, Moscow

  collaborator OTHER_GOV

• University of Leipzig

  collaborator OTHER

• University of Amsterdam

  collaborator OTHER

• Dokuz Eylul University

  collaborator OTHER

• IRCCS Azienda Ospedaliero-Universitaria di Bologna

  collaborator OTHER

• University of Rome Tor Vergata

  collaborator OTHER

• University of Pisa

  collaborator OTHER

• University of Santiago de Compostela

  collaborator OTHER

• Università degli Studi del Piemonte Orientale Amedeo Avogadro

  collaborator OTHER

• University Hospital Muenster

  collaborator OTHER

• Szeged University

  collaborator OTHER

• Centro Hospitalar do Porto

  collaborator OTHER

• University Medical Centre Ljubljana

  collaborator OTHER

• Medical University of Vienna

  collaborator OTHER

• National and Kapodistrian University of Athens

  collaborator OTHER

• Stoffwechselzentrum St. Gallen

  collaborator UNKNOWN

• National Taiwan University Hospital

  collaborator OTHER

• Marmara University

  collaborator OTHER

• University of Palermo

  collaborator OTHER

• Attikon Hospital

  collaborator OTHER

• Kinderkrankenhaus auf der Bult

  collaborator OTHER

• Hopital Universitaire Robert-Debre

  collaborator OTHER

• University of Milan

  collaborator OTHER

• C.I. Parhon National Institute of Endocrinology

  collaborator OTHER

• University of Ulm

  lead OTHER

Principal Investigators

• Martin Wabitsch, Prof. Dr. · University of Ulm

• David Araujo-Vilar, Prof. Dr. · Santiago de Compostela University

• Julia von Schnurbein, Dr. · University of Ulm

• Gabriele Nagel, Prof. · University of Ulm

• Camille Vatier, Dr. · Pierre et Marie Curie School of Medicine (Paris)

• Marie-Christine Vantyghem, Prof. · Lille University

• Giovanni Ceccarini, Dr. · Endocrine Unit, University Hospital of Pisa

• David Savage, Prof. · University of Cambridge Metabolic Research Laboratories

Eligibility

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2017-12-16

Primary Completion

2068-01-31

Completion

2068-01-31

Countries

• Austria
• France
• Germany
• Greece
• Hungary
• Italy
• Netherlands
• Portugal
• Romania
• Russia
• Slovenia
• Spain
• Switzerland
• Taiwan
• Turkey (Türkiye)
• United Kingdom

Study Locations