Rare fat loss disorder under the microscope: 500 patients tracked for clues to diabetes and pancreatitis
NCT ID NCT03087253
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study follows about 500 people with lipodystrophy (a rare condition where the body loses fat tissue) for 5 to 7 years. Researchers want to find out how often diabetes and very high blood fats (triglycerides) occur, and what health problems they cause. Participants visit once a year for checkups and questionnaires. The goal is to better understand these diseases and improve future care.
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Study facts
What this study's own registry entry says, in plain language.
- Participants
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About 500 people
The number the study aims to enrol. It can still change while the study runs.
- Started
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Feb 2018
- Expected to finish
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Mar 2034
An estimate. End dates often move.
- Lead sponsor
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Other sponsor
The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
Who is studied
Patients with a clinical diagnosis of genetic or acquired lipodystrophy
- Ages
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Children (under 18), adults (18 to 64) and older adults (65 and over)
- Sex
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Anyone
- Healthy volunteers
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Not accepted
This study is not open to healthy volunteers. The entry requirements below say who it is open to.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
Inclusion Criteria: * Clinical diagnosis of genetic or acquired lipodystrophy Supportive data: 1) Presence of biallelic known disease-causing variants in the genes for autosomal recessive lipodystrophy syndromes; 2) Presence of a known (or de novo loss of function) disease-causing variant in the genes for autosomal dominant lipodystrophy syndromes; or 3) Clinical supportive data based on morphological criteria together with metabolic abnormalities. Exclusion Criteria: * HIV-infected patients with lipodystrophy * Drug-induced lipodystrophy
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
How to take part
Only the study team decides who joins. These are the ways to reach them.
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The places running it
4 sites in 3 countries. The list below names each one and where it is.
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The official record
ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.
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A doctor treating you
A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.
Contacts and locations
Locations
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Federal University of Ceará
RECRUITINGFortaleza, Ceará, 60.430-370, Brazil
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Izmir Biomedicine and Genome Center
RECRUITINGIzmir, 35380, Turkey (Türkiye)
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National Institutes of Health
RECRUITINGBethesda, Maryland, 20892, United States
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University of Michigan
RECRUITINGAnn Arbor, Michigan, 48105, United States