Massive european registry launches to unlock secrets of rare fat disorder

NCT ID NCT03553420

First seen Jan 11, 2026 · Last updated Jun 23, 2026 · Updated 31 times

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.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

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

    RECRUITING

    Paris, France

    Contact Email: •••••@•••••

  • Abel Salazar Biomedical Sciences Institute - University of Porto

    RECRUITING

    Porto, Portugal

    Contact Email: •••••@•••••

  • Academic Medical Center, University of Amsterdam

    RECRUITING

    Amsterdam, Netherlands

    Contact Email: •••••@•••••

    Contact Email: •••••@•••••

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

    RECRUITING

    Bucharest, Romania

    Contact Email: •••••@•••••

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

    RECRUITING

    Leipzig, Germany

    Contact Email: •••••@•••••

    Contact

    Contact

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

    RECRUITING

    Ulm, 89075, Germany

    Contact

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

  • Dokuz Eylul University School of Medicine

    RECRUITING

    Izmir, Turkey (Türkiye)

    Contact Email: •••••@•••••

  • Endocrine Unit of University Hospital of Pisa

    RECRUITING

    Pisa, Italy

    Contact

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact Email: •••••@•••••

  • Endocrinology Research Centre

    RECRUITING

    Moscow, Russia

    Contact Email: •••••@•••••

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

    RECRUITING

    Bologna, Italy

    Contact Email: •••••@•••••

    Contact

    Contact Email: •••••@•••••

  • Kinder-und Jugendkrankenhaus AUF DER BULT

    RECRUITING

    Hanover, Germany

    Contact Email: •••••@•••••

  • Lille University

    RECRUITING

    Lille, France

    Contact

    Contact

    Contact Email: •••••@•••••

  • Marmara University, Pediatric Endocrinology and Diabetes

    RECRUITING

    Istanbul, Turkey (Türkiye)

    Contact Email: •••••@•••••

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

    RECRUITING

    Münster, 48149, Germany

    Contact Email: •••••@•••••

    Contact Email: •••••@•••••

  • Medical University of Vienna

    RECRUITING

    Vienna, Austria

    Contact Email: •••••@•••••

    Contact Email: •••••@•••••

  • National Taiwan University Hospital

    RECRUITING

    Taipei, Taiwan

    Contact Email: •••••@•••••

  • National and Kapodistrian University of Athens

    RECRUITING

    Athens, Greece

    Contact Email: •••••@•••••

    Contact Email: •••••@•••••

  • Palermo University

    RECRUITING

    Palermo, Italy

    Contact Email: •••••@•••••

  • Pierre et Marie Curie School of Medicine, Sorbonne University

    RECRUITING

    Paris, France

    Contact Email: •••••@•••••

    Contact Email: •••••@•••••

    Contact

  • Policlinic University Hospital of Milan

    RECRUITING

    Milan, Italy

    Contact Email: •••••@•••••

  • Santiago de Compostela University

    RECRUITING

    Santiago de Compostela, Spain

    Contact Email: •••••@•••••

    Contact Email: •••••@•••••

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

    RECRUITING

    Athens, Greece

    Contact Email: •••••@•••••

  • Stoffwechselzentrum friendlydocs

    RECRUITING

    Sankt Gallen, Switzerland

    Contact Email: •••••@•••••

  • Tor Vergata University - Policlinico of Tor Vergata

    RECRUITING

    Roma, Italy

    Contact Email: •••••@•••••

    Contact Email: •••••@•••••

    Contact

  • Universita del piemonte Orientale

    RECRUITING

    Novara, Italy

    Contact Email: •••••@•••••

    Contact Email: •••••@•••••

    Contact

  • University Medical Center Ljubljana - Clinical Institute of Medical Genetics

    RECRUITING

    Ljubljana, Slovenia

    Contact

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • University of Cambridge Metabolic Research Laboratories

    RECRUITING

    Cambridge, United Kingdom

    Contact Email: •••••@•••••

    Contact Email: •••••@•••••

  • University of Szeged, Department of Internal Medicine

    RECRUITING

    Szeged, Hungary

    Contact Email: •••••@•••••

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.

Conditions

The condition(s) this trial relates to.

familial partial lipodystrophy lipodystrophy

As listed by the trial registrant

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