Epidemiological and clinical data from the European Lipodystrophy Registry
Authors' conclusion
This study describes the largest cohort of patients with lipodystrophy reported to date. The dataset offers a comprehensive view of the epidemiology, clinical presentation, and associated comorbidities of lipodystrophy.
Study context
- Population
- Patients with all forms of lipodystrophy (excluding HIV-associated), European Consortium of Lipodystrophies (ECLip) Registry, 19 centers in 13 countries, December 2017 to November 2023467 with prospective data
- Participants
- 631 patients
- Outcome
- Epidemiology and clinical features of lipodystrophy
Methodological detailsinternational, longitudinal registry, multicentre, descriptive statistics
- International
- Longitudinal registry
- Multicentre
- Descriptive statistics
Main finding
As reported in the abstract
- Female
- 82.7%
- Adults
- 86.5%
- Median age
- 44.0 years
- Familial partial lipodystrophy (FPLD), most common subtype
- 57.4%
- FPLD2
- 37.9%
- Men: congenital generalized lipodystrophy vs FPLD
- 33.3% vs. 35.8%
- Metabolic complications
- More than 70%
- Dyslipidemia
- 59.0%
- Diabetes
- 48.4%
- Diabetes prevalence: acquired partial vs acquired localized lipodystrophy
- 76.9% vs. 8.7%
- Metreleptin use
- 11.6%
- Deaths, primarily cardiovascular events and cancer
- 34
- Median age at death: generalized vs partial forms
- 27.0 vs. 72.0 years
Observational data: associations, not effects.
Original publication
Epidemiological and clinical data from the European Lipodystrophy Registry. Eur J Endocrinol. Published 28 October 2025. doi:10.
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