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The management of patients with Ehlers-Danlos syndrome (EDS) is still underdeveloped in healthcare institutions in France. Although multidisciplinary management through exercise rehabilitation has demonstrated its benefits in many chronic pathologies, it has not been evaluated for EDS. As a result, to date there is no evidence of its effectiveness in patients with EDS. The objective of this study is therefore to objectively evaluate the effectiveness of such a treatment on the different dimensions of these patients' health.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| EDS Patients | Other | No intervention during the control period (9 weeks) and then experimental during the rehabilitation stage (9 weeks). |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Rehabilitation | Other | The program takes place over a total period of 9 weeks: for 4 weeks they will be cared for two days a week, then after a week's break, for 4 weeks they will be cared for three days a week for a total of approximately 80 hours of care. The program is multidisciplinary and includes: balneotherapy, ergometry, occupational therapy, gymnastics, physiotherapy, walking, sophrology, yoga as well as different workshops for the therapeutic education of the patient led by several professionals (dieticians, physiotherapists, doctors, psychologists). |
| Measure | Description | Time Frame |
|---|---|---|
| Distance covered in the 6-minute walk test | 9 weeks before baseline ; Baseline ; 9 weeks ; 15 weeks ; 8 months |
| Measure | Description | Time Frame |
|---|---|---|
| Other data from the 6-minute walk test | 9 weeks before baseline ; Baseline ; 9 weeks ; 15 weeks ; 8 months | |
| Time of an endurance test on a cyclo-ergometer | Baseline ; 9 weeks | |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Patrick MUCCI, Prof. | URePSSS | Study Director |
| Cyrille BERGOIN, Dr. | Clinique de la Mitterie | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Clinique de la Mitterie | Lomme | 59160 | France |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 37406924 | Derived | Hakimi A, Bergoin C, De Jesus A, Hoorelbeke A, Ramon P, Florea O, Fabre C, Mucci P. Multiple Sustainable Benefits of a Rehabilitation Program in Therapeutic Management of Hypermobile Ehlers-Danlos Syndrome: A Prospective and Controlled Study at Short- and Medium-Term. Arch Phys Med Rehabil. 2023 Dec;104(12):2059-2066. doi: 10.1016/j.apmr.2023.06.012. Epub 2023 Jul 4. | |
| 35941284 |
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| ID | Term |
|---|---|
| D004535 | Ehlers-Danlos Syndrome |
| ID | Term |
|---|---|
| D020141 | Hemostatic Disorders |
| D014652 | Vascular Diseases |
| D002318 | Cardiovascular Diseases |
| D006474 | Hemorrhagic Disorders |
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| ID | Term |
|---|---|
| D012046 | Rehabilitation |
| ID | Term |
|---|---|
| D000359 | Aftercare |
| D003266 | Continuity of Patient Care |
| D005791 | Patient Care |
| D013812 | Therapeutics |
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Patients are assessed 9 weeks before the start of the program, at the beginning and at the end of the program, and 6 weeks and 6 months after the end of the program. The 9-week period before the program is used as a control condition. It is of the same duration as the program, which also lasts 9 weeks. Patients are asked not to change their lifestyle during the 9-week period before the rehabilitation program.
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|
| Area swept by the gravity center during a balance test on a posturological platform |
Four balance tests : bipodal with eyes open, bipodal with eyes closed and unipodal with eyes open on the two sides |
| 9 weeks before baseline ; Baseline ; 9 weeks ; 15 weeks ; 8 months |
| Tampa scale for kinesiophobia (questionnaire) | 9 weeks before baseline ; Baseline ; 9 weeks ; 15 weeks ; 8 months |
| Brief pain inventory (questionnaire) | 9 weeks before baseline ; Baseline ; 9 weeks ; 15 weeks ; 8 months |
| Nijmegen questionnaire | 9 weeks before baseline ; Baseline ; 9 weeks ; 15 weeks ; 8 months |
| Multidimensional fatigue inventory (questionnaire) | 9 weeks before baseline ; Baseline ; 9 weeks ; 15 weeks ; 8 months |
| Medical outcome study short form 36 (questionnaire) | 9 weeks before baseline ; Baseline ; 9 weeks ; 15 weeks ; 8 months |
| Hospital anxiety and depression scale (questionnaire) | 9 weeks before baseline ; Baseline ; 9 weeks ; 15 weeks ; 8 months |
| Hakimi A, Bergoin C, Mucci P. Evidence of ventilatory constraints during exercise in hypermobile Ehlers-Danlos syndrome. Eur J Appl Physiol. 2022 Nov;122(11):2367-2374. doi: 10.1007/s00421-022-05017-y. Epub 2022 Aug 8. |
| D006402 |
| Hematologic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
| D012868 | Skin Abnormalities |
| D000013 | Congenital Abnormalities |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D012873 | Skin Diseases, Genetic |
| D030342 | Genetic Diseases, Inborn |
| D003095 | Collagen Diseases |
| D003240 | Connective Tissue Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D012871 | Skin Diseases |
| D006296 |
| Health Services |
| D005159 | Health Care Facilities Workforce and Services |