We'd like your feedback
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Julia von Schnurbein, Dr.
0049 731 500
julia.schnurbein@uniklinik-ulm.de
Martin Wabitsch, Prof. Dr.
0049 731 500
martin.wabitsch@uniklinik-ulm.de
Lipodystrophy, Congenital Generalized Lipodystrophy
This information is provided directly by researchers, and we recognise that it isn't always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.
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.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
"von Schnurbein J, Adams C, Akinci B, Ceccarini G, D'Apice MR, Gambineri A, Hennekam RCM, Jeru I, Lattanzi G, Miehle K, Nagel G, Novelli G, Santini F, Santos Silva E, Savage DB, Sbraccia P, Schaaf J, Sorkina E, Tanteles G, Vantyghem MC, Vatier C, Vigouroux C, Vorona E, Araujo-Vilar D, Wabitsch M. European lipodystrophy registry: background and structure. Orphanet J Rare Dis. 2020 Jan 15;15(1):17. doi: 10.1186/s13023-020-1295-y."; "31941540"
You can take part if:
You may not be able to take part if:
This is in the inclusion criteria above
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
Martin Wabitsch, Prof. Dr.
0049 731 500
martin.wabitsch@uniklinik-ulm.de
Julia von Schnurbein, Dr.
0049 731 500
julia.schnurbein@uniklinik-ulm.de
The study is sponsored by University of Ulm and is in collaboration with 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; Ostschweizer Kinderspital.
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
You can print or share the study information with your GP/healthcare provider or contact the research team directly.
