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 suffi
| Condition(s) | Lipodystrophy Acquired, Lipodystrophy Congenital |
|---|---|
| Status | Recruiting |
| Study type | Observational |
| 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 regis |
| Who can participate | Inclusion Criteria: * lipodystrophy Exclusion Criteria: * lipodystrophy due to anti-retroviral drugs |
| Sex | All |
| Lead sponsor | University of Ulm |
| Locations | Vienna, Austria; Lille, France; Paris, France; Paris, France; Hanover, Germany; Leipzig, Germany (+22 more sites) |
| Start date | 2017-12-16 |
| NCT ID | NCT03553420 |
| Official listing | https://clinicaltrials.gov/study/NCT03553420 |