RecruitingOBSERVATIONAL

Registry for Patients With Lipodystrophy

This project is a registry, which means it's a secure database collecting health information from people with lipodystrophy. Lipodystrophy is a rare condition where the body has problems storing or distributing fat. Because there's not much known about it, a group of European experts called ECLip set up this registry. They want to gather information from many patients in different places to get a clearer picture of the condition. This includes details about how the disease starts, how it changes over time, and what treatments people receive. By collecting this information, researchers hope to improve our understanding, leading to better care and treatments for those living with lipodystrophy.

At a glance

Status

Recruiting

Sponsor

University of Ulm

Enrolment target

5,000

Start

16 Dec 2017

Estimated completion

01 Jan 2068

Lipodystrophy Acquired Lipodystrophy Congenital

What is this study about?

If you or someone you know lives with lipodystrophy, you might know it's a rare condition that can be quite different for each person. Because it's not very common, doctors and researchers don't have as much information about it as they do for more common illnesses. This makes it harder to understand exactly how it works, how it affects people over time, and the best ways to treat it.

That's where this registry comes in. Think of a registry as a secure, organised collection of health information. A group of European experts on lipodystrophy, called ECLip, has created this registry to gather important details from many patients. The main goal is to build a clearer and more complete picture of lipodystrophy. This includes understanding the different types, how they develop, what other health problems might come with them, and how various treatments are working for people.

The information collected will help researchers identify patterns, understand the natural course of the disease, and learn about the long-term effects of treatments. Ultimately, by pooling this knowledge from patients across different countries, the hope is to significantly improve our understanding of lipodystrophy, which can lead to better care, guidance for healthcare providers, and potentially new and more effective treatments in the future.

Key takeaways

This is a registry, not a traditional clinical trial with new treatments.
It collects routine health information from people with lipodystrophy.
Aims to improve understanding and care for this rare condition.
Your medical and personal data are kept separate and secure.
You can decide to stop participating at any time.
Open to people of all ages with lipodystrophy (unless caused by anti-retroviral drugs).

Who may be eligible?

This registry is looking for people of all ages who have been diagnosed with lipodystrophy. It doesn't matter how old you are, whether you're a man or a woman, or where you're from if you're treated at a participating hospital.

However, if your lipodystrophy developed because of certain anti-retroviral drugs, usually used for conditions like HIV, then this specific registry is not designed for your situation. It's focused on other types of lipodystrophy.

Your doctor will need to get permission from their local ethics committee, and you will need to give your written consent before any of your information can be added to the registry.

Quick self-check

Do I have a diagnosis of lipodystrophy?
Is my lipodystrophy NOT due to anti-retroviral drugs?
Am I being seen by a doctor at a medical centre that is part of the ECLip registry?
Am I willing to give written consent for my health information to be used?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

If you decide to take part, your doctor will ask for your written permission. Once you agree, your medical team, who already treats you for lipodystrophy, will securely enter relevant information from your regular check-ups into the registry. This isn't about giving you new treatments or extra appointments; it's about making sure the information gathered during your usual care is securely shared for research. The information collected will include details about your diagnosis, any genetic test results, how your condition affects you, other health issues you might have, your lab results, and how your disease has progressed over time. They'll also note any treatments you've received and how they've impacted your quality of life. This data will be taken from your routine visits, so no extra appointments or tests are needed specifically for this registry.

Potential risks and benefits

There are no direct personal medical benefits from joining this registry, as it doesn't involve any new treatments or procedures for you. However, by sharing your information, you are contributing valuable knowledge that can help future patients with lipodystrophy. This information helps researchers better understand the condition and find improved ways to care for and treat it. The main 'risk' is related to data privacy, but strict measures are in place: your medical information and identifying details are stored separately on secure servers. You have the right to withdraw your consent at any time, which means your data will no longer be collected for the registry.

Locations (28)

Medical University of Vienna
Vienna, Austria· Recruiting
Lille University
Lille, France· Recruiting
AP-HP Nord Université de Paris, Hôpital Universitaire Robert-Debré
Paris, France· Recruiting
Pierre et Marie Curie School of Medicine, Sorbonne University
Paris, France· Recruiting
Kinder-und Jugendkrankenhaus AUF DER BULT
Hanover, Germany· Recruiting
Department of Internal Medicine (Endocrinology and Nephrology), University of Leipzig
Leipzig, Germany· Recruiting
Med. Klinik B für Gastroenterologie und Hepatologie, Universitätsklinikum Münster
Münster, Germany· Recruiting
Dept for Pediatrics and Adolescent Medicine, University of Ulm: Interdisciplinary obesity clinic
Ulm, Germany· Recruiting
National and Kapodistrian University of Athens
Athens, Greece· Recruiting
Second Department of Internal Medicine, Medical School, National and Kapodistrian University of Athens, Attikon University Hospital
Athens, Greece· Recruiting
University of Szeged, Department of Internal Medicine
Szeged, Hungary· Recruiting
Endocrinology Unit, Department of Clinical and Medical science, S. Orsola-Malpighi Hospital , University of Bologna
Bologna, Italy· Recruiting

+16 more sites — see the official record for the full list.

Common questions

What is a registry?

A registry is a secure database that collects health information from many people with a specific condition. It helps researchers understand illnesses better.

Will I get any special treatment or medication by joining?

No, joining this registry will not change your current treatment or involve any new medications. It simply collects information from your routine care.

Who will see my personal information?

Your medical information and identifying details are stored on separate, secure computer systems to protect your privacy. Only authorised research staff can access the anonymised data.

Can I change my mind after joining?

Yes, you can withdraw your consent at any time. If you do, no more of your health information will be added to the registry.

How will this registry help people with lipodystrophy?

By gathering information from many patients, researchers can learn more about how lipodystrophy progresses, what complications arise, and which treatments are most effective, leading to better care for everyone.

How to find out more

Julia von Schnurbein, Dr.

julia.schnurbein@uniklinik-ulm.de 0049 731 500 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.