ECLip Registry
Research type
Research Database
IRAS ID
236874
Contact name
David Savage
Contact email
Research summary
European Consortium of Lipodystrophies (ECLip) Registry
REC name
Wales REC 7
REC reference
19/WA/0095
Date of REC Opinion
1 Apr 2019
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Patients will be provided with an information sheet and consent and asked if the consent to having their data collected by the registry. Medical data will be collected about the condition and data on the storage of existing biomaterials (although physical storage will be in each centres own hospital/ storage facility) will also be shared. However, these samples, where they exist, will not be used at all in this study. The registry project is based on routine examinations that are usually carried out during outpatient appointments or inpatient days.
Research programme
The ECLip Registry has been set up by the European of Lipodystrophies consortium to collect data about people living with lipodystrophy. It aims to advance understanding and management of the condition by consolidating information in one place. Due to the rare nature of lipodystrophy there is a lack of knowledge on lipodystrophy and therefore there is a need to share patient experience and management over long periods of time. A multicentre registry is necessary to allow sufficient amounts of patient information to be collected to advance understanding of the natural history of the disease, optimal management strategies and to inform further research questions.
Research database title
European Consortium of Lipodystrophies (ECLip) Registry
Establishment organisation
University of Ulm
Establishment organisation address
Division of Pediatric Endocrinology and Diabetes
Eythstr. 24 / 89075 Ulm