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Massive european registry launches to unlock secrets of rare fat disorder

NCT ID NCT03553420

Knowledge-focused Sponsor: University of Ulm Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study is a European registry for people with lipodystrophy, a rare condition where the body loses or lacks fat tissue. Researchers will follow up to 5,000 patients over time, collecting health data and genetic information. The goal is to better understand the disease, its progression, and how it affects patients, which could lead to improved care and future research.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this registry could provide crucial data to better understand lipodystrophy and improve care for patients.
What could go wrong
This is an observational registry, not a treatment trial. It will not directly test any new therapy, so benefits for patients are indirect and long-term.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 5,000 people

The number the study aims to enrol. It can still change while the study runs.

Started

Dec 2017

Expected to finish

Jan 2068

An estimate. End dates often move.

Lead sponsor

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

all patients with lipodystrophy not due to anti-retroviral drugs presenting to a participating center might be entered

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

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

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * lipodystrophy Exclusion Criteria: * lipodystrophy due to anti-retroviral drugs

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Conditions

The condition(s) this trial relates to.

acquired lipodystrophy congenital generalized lipodystrophy familial partial lipodystrophy lipodystrophy

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Lipodystrophy acquired Lipodystrophy congenital

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    28 sites in 16 countries. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. 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

  • AP-HP Nord Université de Paris, Hôpital Universitaire Robert-Debré

    RECRUITING

    Paris, France

  • Abel Salazar Biomedical Sciences Institute - University of Porto

    RECRUITING

    Porto, Portugal

  • Academic Medical Center, University of Amsterdam

    RECRUITING

    Amsterdam, Netherlands

  • C. I. Parhon National Institute of Endocrinology, Bucharest, Romania

    RECRUITING

    Bucharest, Romania

  • Department of Internal Medicine (Endocrinology and Nephrology), University of Leipzig

    RECRUITING

    Leipzig, Germany

  • Dept for Pediatrics and Adolescent Medicine, University of Ulm: Interdisciplinary obesity clinic

    RECRUITING

    Ulm, 89075, Germany

  • Dokuz Eylul University School of Medicine

    RECRUITING

    Izmir, Turkey (Türkiye)

  • Endocrine Unit of University Hospital of Pisa

    RECRUITING

    Pisa, Italy

  • Endocrinology Research Centre

    RECRUITING

    Moscow, Russia

  • Endocrinology Unit, Department of Clinical and Medical science, S. Orsola-Malpighi Hospital , University of Bologna

    RECRUITING

    Bologna, Italy

  • Kinder-und Jugendkrankenhaus AUF DER BULT

    RECRUITING

    Hanover, Germany

  • Lille University

    RECRUITING

    Lille, France

  • Marmara University, Pediatric Endocrinology and Diabetes

    RECRUITING

    Istanbul, Turkey (Türkiye)

  • Med. Klinik B für Gastroenterologie und Hepatologie, Universitätsklinikum Münster

    RECRUITING

    Münster, 48149, Germany

  • Medical University of Vienna

    RECRUITING

    Vienna, Austria

  • National Taiwan University Hospital

    RECRUITING

    Taipei, Taiwan

  • National and Kapodistrian University of Athens

    RECRUITING

    Athens, Greece

  • Palermo University

    RECRUITING

    Palermo, Italy

  • Pierre et Marie Curie School of Medicine, Sorbonne University

    RECRUITING

    Paris, France

  • Policlinic University Hospital of Milan

    RECRUITING

    Milan, Italy

  • Santiago de Compostela University

    RECRUITING

    Santiago de Compostela, Spain

  • Second Department of Internal Medicine, Medical School, National and Kapodistrian University of Athens, Attikon University Hospital

    RECRUITING

    Athens, Greece

  • Stoffwechselzentrum friendlydocs

    RECRUITING

    Sankt Gallen, Switzerland

  • Tor Vergata University - Policlinico of Tor Vergata

    RECRUITING

    Roma, Italy

  • Universita del piemonte Orientale

    RECRUITING

    Novara, Italy

  • University Medical Center Ljubljana - Clinical Institute of Medical Genetics

    RECRUITING

    Ljubljana, Slovenia

  • University of Cambridge Metabolic Research Laboratories

    RECRUITING

    Cambridge, United Kingdom

  • University of Szeged, Department of Internal Medicine

    RECRUITING

    Szeged, Hungary

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