Registry for patients with lipodystrophy
Osse Registry for Patients With Lipodystrophy Run by the European Consortium of Lipodystrophies (ECLip)
University of Ulm · NCT03553420
This study is creating a registry to track the health and progress of people with lipodystrophy so that researchers can better understand the condition and improve care.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 5000 (estimated) |
| Sex | All |
| Sponsor | University of Ulm (other) |
| Locations | 28 sites (Vienna and 27 other locations) |
| Trial ID | NCT03553420 on ClinicalTrials.gov |
What this trial studies
This registry aims to monitor the progression of lipodystrophy, a rare disease, by consolidating patient data across multiple locations. The European Consortium of Lipodystrophies (ECLip) has developed a web-based platform to facilitate data collection while ensuring data protection and sovereignty. Medical centers worldwide can participate by entering patient data after obtaining necessary permissions and consent. The registry will help improve research conditions and provide reliable information on the incidence and health status of lipodystrophy patients.
Who should consider this trial
Good fit: Ideal candidates for this registry are individuals diagnosed with lipodystrophy.
Not a fit: Patients whose lipodystrophy is caused by anti-retroviral drugs may not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could enhance understanding and management of lipodystrophy, leading to better patient care and treatment options.
How similar studies have performed: Other studies have successfully utilized registries for rare diseases, indicating that this approach is promising.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * lipodystrophy Exclusion Criteria: * lipodystrophy due to anti-retroviral drugs
Where this trial is running
Vienna and 27 other locations
- Medical University of Vienna — Vienna, Austria (RECRUITING)
- Lille University — Lille, France (RECRUITING)
- AP-HP Nord Université de Paris, Hôpital Universitaire Robert-Debré — Paris, France (RECRUITING)
- Pierre et Marie Curie School of Medicine, Sorbonne University — Paris, France (RECRUITING)
- Kinder-und Jugendkrankenhaus AUF DER BULT — Hanover, Germany (RECRUITING)
- Department of Internal Medicine (Endocrinology and Nephrology), University of Leipzig — Leipzig, Germany (RECRUITING)
- Med. Klinik B für Gastroenterologie und Hepatologie, Universitätsklinikum Münster — Münster, Germany (RECRUITING)
- Dept for Pediatrics and Adolescent Medicine, University of Ulm: Interdisciplinary obesity clinic — Ulm, Germany (RECRUITING)
- National and Kapodistrian University of Athens — Athens, Greece (RECRUITING)
- Second Department of Internal Medicine, Medical School, National and Kapodistrian University of Athens, Attikon University Hospital — Athens, Greece (RECRUITING)
- University of Szeged, Department of Internal Medicine — Szeged, Hungary (RECRUITING)
- Endocrinology Unit, Department of Clinical and Medical science, S. Orsola-Malpighi Hospital , University of Bologna — Bologna, Italy (RECRUITING)
- Policlinic University Hospital of Milan — Milan, Italy (RECRUITING)
- Universita del piemonte Orientale — Novara, Italy (RECRUITING)
- Palermo University — Palermo, Italy (RECRUITING)
- Endocrine Unit of University Hospital of Pisa — Pisa, Italy (RECRUITING)
- Tor Vergata University - Policlinico of Tor Vergata — Roma, Italy (RECRUITING)
- Academic Medical Center, University of Amsterdam — Amsterdam, Netherlands (RECRUITING)
- Abel Salazar Biomedical Sciences Institute - University of Porto — Porto, Portugal (RECRUITING)
- C. I. Parhon National Institute of Endocrinology, Bucharest, Romania — Bucharest, Romania (RECRUITING)
- Endocrinology Research Centre — Moscow, Russia (RECRUITING)
- University Medical Center Ljubljana - Clinical Institute of Medical Genetics — Ljubljana, Slovenia (RECRUITING)
- Santiago de Compostela University — Santiago de Compostela, Spain (RECRUITING)
- Stoffwechselzentrum friendlydocs — Sankt Gallen, Switzerland (RECRUITING)
- National Taiwan University Hospital — Taipei, Taiwan (RECRUITING)
- Marmara University, Pediatric Endocrinology and Diabetes — Istanbul, Turkey (Türkiye) (RECRUITING)
- Dokuz Eylul University School of Medicine — Izmir, Turkey (Türkiye) (RECRUITING)
- University of Cambridge Metabolic Research Laboratories — Cambridge, United Kingdom (RECRUITING)
Study contacts
- Principal investigator: David Araujo-Vilar, Prof. Dr. — Santiago de Compostela University
- Study coordinator: Julia von Schnurbein, Dr.
- Email: julia.schnurbein@uniklinik-ulm.de
- Phone: 0049 731 500
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Lipodystrophy Acquired, Lipodystrophy Congenital, lipodystrophy