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Registry for Patients With Lipodystrophy

Study acronym: ECLip Registry
StatusRecruiting
PhaseNot specified
Started
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Record History

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  1. Study sites: 19 to 28
    • Collaborators: 18 to 27
    v9
  2. Re-verified, no change to tracked fieldsv8
  3. Study sites: 23 to 19
    • Collaborators: 21 to 18
    v7
  4. Secondary endpoints: details revised at 1 of 5 entriesv6
  5. Study sites: 17 to 23
    • Collaborators: 18 to 21
    • Publications: details revised at 1 of 1 entry
    v5
Show 3 earlier versionsHide 3 earlier versions
  1. Collaborators revised (18)v4
  2. Collaborators: 16 to 18v3
  3. Collaborators revised (16)v2
  1. Study First Submitted
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
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.
Trial Details
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
(from sponsor)		 Lipodystrophy Acquired, Lipodystrophy Congenital
Related terms Lipodystrophy, Lipodystrophy, Familial Partial
Enrollment 5,000 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov