Landmark study maps the hidden journey of a rare, Life-Threatening disorder
NCT ID NCT05976841
Summary
This study aims to understand the natural progression of vascular Ehlers-Danlos syndrome (vEDS), a rare genetic disorder that weakens blood vessels and organs. By observing 340 patients over time, researchers will track the order in which different complications appear and how they affect patients' lives and health costs. The goal is to gather detailed knowledge to help guide better care and management for people with vEDS in the future.
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Contacts and locations
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Locations
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Centre Hospitalier Universitaire Angers
Angers, France
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Hôpital Brabois
Nancy, France
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Hôpital Claude Huriez
Lille, France
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Hôpital Côte de Nacre
Caen, France
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Hôpital Edouard Herriot
Lyon, France
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Hôpital Européen Georges Pompidou
Paris, France
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Hôpital Femme Mère Enfant
Lyon, France
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Hôpital Gabriel Montpied
Clermont-Ferrand, France
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Hôpital Hôtel Dieu
Nantes, France
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Hôpital Michallon
Grenoble, France
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Hôpital Nord
Saint-Etienne, France
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Hôpital Rangueil
Toulouse, France
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Hôpital Saint-André
Bordeaux, France
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Hôpital Saint-Eloi
Montpellier, France
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Hôpital Trousseau
Tours, France
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Hôpital de la Cavale Blanche
Brest, France
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Hôpital de la Timone
Marseille, France
Conditions
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