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Registry

OSSE Registry for Patients with Lipodystrophy run by the European Consortium of Lipodystrophy (ECLip)


Introduction

Because lipodystrophic syndromes are extremely rare diseases with heterogeneous phenotypes, the ECLip consortium has decided to set up a registry for patients with lipodystrophy. 


Aim of the registry

The aim of this registry is to enable physicians across Europe but also outside of Europe to work together in the field of lipodystrophy and to accumulate sufficient data for sound research in this area. By comparing the natural course of disease and current treatment strategies (and their outcome) across different nations, the registry strives for a better understanding of the cause and course of lipodystrophy as well as recognizing optimal treatment strategies. 


Methods 

The ECLip registry is based on OSSE (Open Source Registry System for Rare Diseases in the EU) – an open source software and toolbox (www.osse-register.de), providing an easily accessible IT framework and organizational processes to set up a Rare Diseases Registry. This platform is imbedded in various ERNs and is the basis for a range of other registries. One aim of OSSE is to enable data exchange between different registries.

Based on current knowledge on pathophysiology, natural course and current treatment options of the various sub-types of lipodystrophy, forms for diagnosis, family history, natural course of disease and treatment are provided. The platform is web based; data of patients agreeing to participate is entered locally at each center and transferred via the internet to the appointed ECLip registry server at the University Medical Center Ulm. In this process, each patient is pseudonymized and identifying data (IDAT) and medical data (MDAT) are transferred and stored on different servers to comply with all current data protection requirements. The patient retains the right to view his or her data at any time. Otherwise, only the care-taking physician has access to all the data of the patient. Mutual data evaluation will take place only with consent of the care-taking physician. 

Any center/physician looking after patients with lipodystrophy can apply to participate. By participating, the physicians will become ECLip Registry member. The registry is run by a registry board elected from all ECLip Registry Members every three years. The board is responsible for the upkeep of the registry and to put decisions to the ECLip Registry Meeting hold annually.

Perspective

The registry has been registered at ClinicalTrials.gov (ClinicalTrials.gov ID: NCT03553420). Over 15 centers are so far participating. 

We strongly believe that only joint efforts in the area of lipodystrophy will improve scientific knowledge and result in improved treatment for the patients. Therefore we would like to invite each and every center/physician within and also outside of Europe caring for patients with lipodystrophy to participate in the ECLip registry. We are happy to help every interested future member to obtain ethic approval at their local center. 

For physicians: If you are interested in joining the ECLip Registry or would like to have more information, please contact:

  • David Araujo-Vilar  (david.araujo@usc.es)
  • Martin Wabitsch  (Martin.Wabitsch@uniklinik-ulm.de)
  • Julia von Schnurbein  (julia.schnurbein@uniklinik-ulm.de)
  • Or any other ECLip registry board member


For patients: If you are interested in participating in the ECLip Registry, please talk to your specialist. If he or she is not an ECLip Registry member yet, we are happy to help him/her to become a member. 

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