An observational study in Lipodystrophy Acquired and Lipodystrophy Congenital, sponsored by University of Ulm. Recruiting at 28 sites in 16 countries. Per ClinicalTrials.gov, last updated 2025-12-02.
Sponsored by University of Ulm · Observational
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.
As lipodystrophies are rare diseases subdivided into yet rarer sub-groups, research in this field requires international co-operation.
The European Consortium of Lipodystrophy (ECLip) consists of an association of European experts in the field of lipodystrophy. It has set up a Registry Board to implement a registry for patients with lipodystrophy using the Open Source Software OSSE (Open Source Registry System for Rare Diseases in the EU), which is a web based platform focused on a federated approach that allows to perform distributed searches which are designed to comply data protection requirements and preserve data sovereignty. To ensure data protection, medical and identifying data will be stored on two different servers both run by the Institute for Epidemiology and Medical Biometry of the University of Ulm.
Medical centers from all over the world where patients are treated with lipodystrophy are invited to join the ECLip Registry and to become ECLip Registry members. Upon registration, they can enter patient data after they have obtained local ethic committee permission and the patient in question has given written consent to this. Data entry is done at the individual locations via a web-based user interface. Identifying data are recorded directly into the identity management system. Communication between the identity management and the OSSE registry happens via a web browser.
The aim of the patient registry is to compile data on the natural history of each different sub-group of lipodystrophies, their comorbidities, treatment options used and medical and quality of life out-come for the patients. For this, the following data retrieved from regular patient visits are collected:
Research within this registry can be performed by participating clinicians/researchers and third parties after a research proposal has be accepted by the responsible committee of the ECLip. The registry aims to answer the following questions
20 studies on the registry are indexed under Lipodystrophy, Familial Partial; 5 are open to participants now.
Browse Lipodystrophy, Familial Partial studies →University of Ulm is the lead sponsor of 143 studies on the registry; 25 are open to participants now.
Counted across the registry records on this site, refreshed daily.
all patients with lipodystrophy not due to anti-retroviral drugs presenting to a participating center might be entered
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
Age at death
patients are followed regularly, age at death (years) will be documented
Time frame: after 20 years
change in somatic comorbidities under standard treatment
standardized physical examination, laboratory and instrument based tests
Time frame: yearly for 50 years
genotype-phenotype correlation for patients with familial lipodystrophy
molecular genetic results will be compared to results from standardized physical examination, laboratory and instrument based tests
Time frame: every 5 years for 50 years
age at onset of metabolic complications
metabolic complications will be assessed via standardized physical examination, laboratory and instrument based tests
Time frame: yearly for 50 years
age at onset orthopedic complications
orthopedic complications will be assessed via standardized physical examination, laboratory and instrument based tests
Time frame: yearly for 50 years
age at onset neuromuscular complications
neuromuscular complications will be assessed via standardized physical examination, laboratory and instrument based tests
Time frame: yearly for 50 years
Plan to share: Yes — Researches participating in the ECLip registry and third parties independently can request to perform research with the data.
Time frame: As soon as data is entered into the registry, request for data analysis can be handed in.
Access criteria: Researchers participating in the ECLip registry and independent third parties can request to perform research with the data. For this a formal request for data analysis (data evaluation form; available from the Registry Board) has to be handed to the leader of the Registry Board who will pass it to all board members. These will form a proposal for the Registry members.
Data sharing details ↗ · www.eclip-web.org
Started Dec 2017 (actual). Primary completion is estimated for Jan 2068, 601 months after the start.
How these figures are worked out, and which studies are left out of them.
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
Contact study teamGet an email when the registry record changes — status, dates, results — or when someone posts here.
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Lipodystrophy, Familial Partial →