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
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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.
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
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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AP-HP Nord Université de Paris, Hôpital Universitaire Robert-Debré
RECRUITINGParis, France
Contact Email: •••••@•••••
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Abel Salazar Biomedical Sciences Institute - University of Porto
RECRUITINGPorto, Portugal
Contact Email: •••••@•••••
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Academic Medical Center, University of Amsterdam
RECRUITINGAmsterdam, Netherlands
Contact Email: •••••@•••••
Contact Email: •••••@•••••
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C. I. Parhon National Institute of Endocrinology, Bucharest, Romania
RECRUITINGBucharest, Romania
Contact Email: •••••@•••••
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Department of Internal Medicine (Endocrinology and Nephrology), University of Leipzig
RECRUITINGLeipzig, Germany
Contact Email: •••••@•••••
Contact
Contact
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Dept for Pediatrics and Adolescent Medicine, University of Ulm: Interdisciplinary obesity clinic
RECRUITINGUlm, 89075, Germany
Contact
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact
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Dokuz Eylul University School of Medicine
RECRUITINGIzmir, Turkey (Türkiye)
Contact Email: •••••@•••••
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Endocrine Unit of University Hospital of Pisa
RECRUITINGPisa, Italy
Contact
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact Email: •••••@•••••
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Endocrinology Research Centre
RECRUITINGMoscow, Russia
Contact Email: •••••@•••••
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Endocrinology Unit, Department of Clinical and Medical science, S. Orsola-Malpighi Hospital , University of Bologna
RECRUITINGBologna, Italy
Contact Email: •••••@•••••
Contact
Contact Email: •••••@•••••
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Kinder-und Jugendkrankenhaus AUF DER BULT
RECRUITINGHanover, Germany
Contact Email: •••••@•••••
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Lille University
RECRUITINGLille, France
Contact
Contact
Contact Email: •••••@•••••
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Marmara University, Pediatric Endocrinology and Diabetes
RECRUITINGIstanbul, Turkey (Türkiye)
Contact Email: •••••@•••••
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Med. Klinik B für Gastroenterologie und Hepatologie, Universitätsklinikum Münster
RECRUITINGMünster, 48149, Germany
Contact Email: •••••@•••••
Contact Email: •••••@•••••
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Medical University of Vienna
RECRUITINGVienna, Austria
Contact Email: •••••@•••••
Contact Email: •••••@•••••
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National Taiwan University Hospital
RECRUITINGTaipei, Taiwan
Contact Email: •••••@•••••
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National and Kapodistrian University of Athens
RECRUITINGAthens, Greece
Contact Email: •••••@•••••
Contact Email: •••••@•••••
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Palermo University
RECRUITINGPalermo, Italy
Contact Email: •••••@•••••
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Pierre et Marie Curie School of Medicine, Sorbonne University
RECRUITINGParis, France
Contact Email: •••••@•••••
Contact Email: •••••@•••••
Contact
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Policlinic University Hospital of Milan
RECRUITINGMilan, Italy
Contact Email: •••••@•••••
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Santiago de Compostela University
RECRUITINGSantiago de Compostela, Spain
Contact Email: •••••@•••••
Contact Email: •••••@•••••
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Second Department of Internal Medicine, Medical School, National and Kapodistrian University of Athens, Attikon University Hospital
RECRUITINGAthens, Greece
Contact Email: •••••@•••••
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Stoffwechselzentrum friendlydocs
RECRUITINGSankt Gallen, Switzerland
Contact Email: •••••@•••••
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Tor Vergata University - Policlinico of Tor Vergata
RECRUITINGRoma, Italy
Contact Email: •••••@•••••
Contact Email: •••••@•••••
Contact
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Universita del piemonte Orientale
RECRUITINGNovara, Italy
Contact Email: •••••@•••••
Contact Email: •••••@•••••
Contact
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University Medical Center Ljubljana - Clinical Institute of Medical Genetics
RECRUITINGLjubljana, Slovenia
Contact
Contact Phone: •••-•••-•••• Email: •••••@•••••
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University of Cambridge Metabolic Research Laboratories
RECRUITINGCambridge, United Kingdom
Contact Email: •••••@•••••
Contact Email: •••••@•••••
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University of Szeged, Department of Internal Medicine
RECRUITINGSzeged, 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.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.