Patient Education Program and Ehlers-Danlos Syndrome — PREDUSED  

Hypermobility Type Ehlers-Danlos Syndrome Clinical Trial

Official title: Evaluation of an Education Program for Patients With Hypermobility Type Ehlers-Danlos Syndrome

Status Completed

Clinical Trial Summary

The Ehlers-Danlos Syndrome (SED) comprises a group of clinically and genetically heterogeneous, inherited connective tissue diseases. The hypermobility type is the most frequent. It is characterized by a generalized joint hypermobility and a hyperextension skin.

Chronic pain syndrome is often present. Its psychological impact can be significant (anxiety, depression, impact on the quality of life of the patients). The disease also requires changes and a permanent adaptability (coping). It can lead to feelings of isolation and misunderstanding.

The French association of the Ehlers-Danlos Syndromes and the rehabilitation center of the 'Croix-Rouge Française des Massues' propose a patient education program for the patients with a hypermobility type SED (the PrEduSED program). This education program is open to patients and their caregivers located in France.

The research hypothesis is that the PrEduSED program improves their coping and reduces patient anxiety at 6 months (these are the two clinical criteria on which the PrEduSED could have the most impact, given the results of the first sessions).

Clinical Trial Description

n/a

Study Design

Observational Model: Cohort, Time Perspective: Prospective

Related Conditions & MeSH terms

• Ehlers-Danlos Syndrome
• Hypermobility Type Ehlers-Danlos Syndrome
• Syndrome

• NCT number: NCT02817490
• Study type: Observational
• Source: Hospices Civils de Lyon
• Status: Completed
• Phase: N/A
• Start date: April 2013
• Completion date: October 2015