Clinical Trials
Genetic Variations in Patients with Ehlers-Danlos Syndrome
https://clinicaltrials.gov/ct2/show/NCT03093493
Genetics of Ehlers-Danlos Syndrome
Study Type : Observational [Patient Registry]
Estimated Enrollment : 300 participants
Observational Model: Case-Control
Time Perspective: Cross-Sectional
Target Follow-Up Duration: 1 Year
Official Title: Determine the Causative Genetic Variations in Patients With Ehlers-Danlos Syndrome
Actual Study Start Date : August 25, 2017
Estimated Primary Completion Date : September 2020
Estimated Study Completion Date : December 2020
Autonomic Small Fiber Neuropathy and Ehlers Danlos Syndromes – Prospective Study and Registry (ProANS) [Observational Study]
https://clinicaltrials.gov/ct2/show/NCT04310644
Autonomic Small Fiber Neuropathy and Ehlers Danlos Syndromes – Prospective Study and Registry (ProANS)
Brief Summary:
We examine patients with different autonomic neuropathies and Ehlers Danlos syndromes compared to healthy controls at three different points over time (baseline, after 3 months and after 1.5 years) to gain knowledge about the course of this disease and understand its pathophysiology, with a focus on Small Fiber neuropathy.
Condition or disease Intervention/treatment
Autonomic Neuropathy
Ehlers-Danlos Syndrome Hypermobility Type
Small Fiber Neuropathy
Postural Tachycardia Syndrome
Other: No intervention planned, but all patients get our standart treatment
Detailed Description:
Inclusion of patients with autoimmune autonomic neuropathies/ pure autonomic failure, postural orthostatic tachycardia syndrome, small fiber neuropathies and Ehlers Danlos syndromes in our Register study with follow up visits. Comparison to healthy controls.
Planned examinations are laboratory tests, questionnaires on mental and physical health status and circulatory disorders, attention tests, tilt table testing, sweat function, investigation of small fiber function via quantitative sensory testing as well as the density of nerve fibers in the skin. Measurements are performed at baseline mostly in clinical routine and follow up visits are offered.
Complex Aortic Aneurysm Repair Using Physician Modified Endografts and Custom Made Devices
https://clinicaltrials.gov/ct2/show/NCT02050113?type=Intr&cond=Ehlers-Danlos+Syndrome&lupd_s=10%2F16%2F2019&lupd_d=14
Conditions : Complex Aortic Aneurysms; Thoracoabdominal Aneurysms; Pararenal Aneurysms; Juxtarenal Aneurysms; Marfan Syndrome; Ehlers-Danlos Syndrome; Loeys-Dietz Syndrome
Intervention : Device: Custom Made Fenestrated or Branched Stent Graft
Sponsor : University of Massachusetts, Worcester
Recruiting
Complex Aortic Aneurysm Repair Using Physician Modified Endografts and Custom Made Devices
NCT02050113
Thu, 30 Jan 2014 12:00:00 EST
Last Update Posted: 10/30/19 09:46AM
Registry of Ehlers-Danlos Syndrome (RED) [Observational Study]
https://clinicaltrials.gov/ct2/show/NCT04133272
Registry of Ehlers-Danlos Syndrome (RED)
Study Type : Observational [Patient Registry]
Estimated Enrollment : 3000 participants
Observational Model: Cohort
Time Perspective: Other
Target Follow-Up Duration: 15 Years
Official Title: Registry of Ehlers-Danlos Syndrome That Collects Clinical, Functional, Genetic, Genealogical, Imaging, Surgical, Quality of Life Data. Data Are Linked to Patients Biological Sample
Actual Study Start Date : June 2014
Estimated Primary Completion Date : June 2022
Estimated Study Completion Date : January 2033
Local Anesthetic Response in Ehlers-Danlos Syndrome (EDS) and Healthy Volunteers [Observational Study]
https://clinicaltrials.gov/ct2/show/NCT04036305
Local Anesthetic Response in Ehlers-Danlos Syndrome (EDS) and Healthy Volunteers
Detailed Description:
There was a prior large online questionnaire to better understand the issues around local anesthetic resistance. By November 2018, 933 EDS patients (total 1059 respondents) completed the survey, 99.2% of which had previously received local anesthetics. Among these patients, 88% reported that they have “had a problem with local anesthetic injection not working adequately or properly,” while only 54% of respondents without EDS reported a similar problem. These data suggests that local anesthetic resistance might be more prevalent in patients with EDS than in the general population. If these findings are true, then this might have significant implications for the appropriate management of these patients during minor surgery and dental procedures.
This study aims to assess the frequency and related issues around local anesthetic resistance in EDS patients, including whether the problem is a lack of analgesia or a timing effect (short duration of action or delayed onset of action), and whether the problem relates only to some local anesthetics or whether there is a problem with the whole class of local anesthetics.
Study Design
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Study Type : Observational
Estimated Enrollment : 230 participants
Observational Model: Cohort
Time Perspective: Prospective
Official Title: Local Anesthetic Response in Ehlers-Danlos Syndrome (EDS) and Healthy Volunteers
Actual Study Start Date : July 26, 2019
Estimated Primary Completion Date : December 31, 2020
Estimated Study Completion Date : December 31, 2020
Somatosensori Remediation for Postural Control in the Treatment of Ehlers-Danlos Syndrome Hypermobility Type (hEDS)
https://clinicaltrials.gov/ct2/show/NCT04020107?type=Intr&cond=Ehlers-Danlos+Syndrome&lupd_s=07%2F01%2F2019&lupd_d=14
Condition : Ehlers-Danlos Syndrome Hypermobility Type (hEDS)
Intervention : Other: Compressive garment and Somatosensori Remediation
Sponsor : University Hospital, Caen
Recruiting
Validity of Somatosensori Remediation for Postural Control in the Treatment of Ehlers-Danlos Syndrome Hypermobility Type (hEDS)
NCT04020107
Mon, 15 Jul 2019 12:00:00 EDT
Last Update Posted: 07/15/19 09:31AM
Evaluation of the Effect of Custom Compression Garments on Standing Static Balance in Ehlers Danlos Syndrome
https://clinicaltrials.gov/ct2/show/NCT03986229?type=Intr&cond=Ehlers-Danlos+Syndrome&lupd_s=05%2F31%2F2019&lupd_d=14
Condition : Ehlers-Danlos Syndrome
Intervention : Other: Evaluate the variation in the travel speed of the “center of pressure” with and without VCSM.
Sponsor : University Hospital, Toulouse
Recruiting
Evaluation of the Effect of Custom Compression Garments on Standing Static Balance in Ehlers Danlos Syndrome
NCT03986229
Fri, 14 Jun 2019 12:00:00 EDT
Last Update Posted: 06/14/19 06:46AM
Study of Arterial Properties by Ultra-high Frequency Ultrasound in Fibromuscular Dysplasia and Vascular Ehlers-Danlos Syndrome (FUCHSIA-FR)
https://clinicaltrials.gov/ct2/show/NCT03596437?cond=Ehlers-Danlos+Syndrome&sort=nwst&draw=2&rank=8
Study of Arterial Properties by Ultra-high Frequency Ultrasound in Fibromuscular Dysplasia and Vascular Ehlers-Danlos Syndrome (FUCHSIA-FR)
Study Type : Interventional (Clinical Trial)
Estimated Enrollment : 90 participants
Allocation: Non-Randomized
Intervention Model: Parallel Assignment
Masking: None (Open Label)
Primary Purpose: Diagnostic
Official Title: Study of Arterial Properties by Ultra-high Frequency Ultrasound in Fibromuscular Dysplasia and Vascular Ehlers-Danlos Syndrome
Actual Study Start Date : January 7, 2019
Estimated Primary Completion Date : March 2019
Estimated Study Completion Date : March 2019
Angiotensin II Receptor Blockade in Vascular Ehlers Danlos Syndrome (ARCADE)
https://clinicaltrials.gov/ct2/show/NCT02597361
Angiotensin II Receptor Blockade in Vascular Ehlers Danlos Syndrome (ARCADE)
Study Type : Interventional (Clinical Trial)
Estimated Enrollment : 108 participants
Allocation: Randomized
Intervention Model: Parallel Assignment
Masking: Double (Participant, Investigator)
Primary Purpose: Treatment
Official Title: Angiotensin II Receptor Blockade in Vascular Ehlers Danlos Syndrome: a Double Blind, Randomized, Placebo Controlled, Multicenter Trial.
Actual Study Start Date : January 2016
Estimated Primary Completion Date : April 2020
Estimated Study Completion Date : April 2020
Gait Retraining in Patients With Joint Hypermobility Syndrome/Hypermobile Ehlers Danlos Syndrome
https://clinicaltrials.gov/ct2/show/NCT03575182
Gait Retraining in Patients With Joint Hypermobility Syndrome/Hypermobile Ehlers Danlos Syndrome
Prevalence of FODMAP Intolerance and JHS in FGID and Association With Microbiome, Dyssynergic Defecation and Dietary Intervention (PreDiMi)
https://clinicaltrials.gov/ct2/show/NCT03460613
Prevalence of FODMAP Intolerance and JHS in FGID and Association With Microbiome, Dyssynergic Defecation and Dietary Intervention (PreDiMi)