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Angiotensin II Receptor Blockade in Vascular Ehlers Danlos Syndrome (ARCADE)

purpose: This study aims to verify the hypothesis that patients with Vascular Ehlers Danlos syndrome (vEDS) should benefit of the blockade of angiotensin (Ang) II noxious effects on their vasculature affected by a defect in type III collagen in addition to the effects celiprolol. This randomized, double blind, placebo controlled trial compares the administration of the Ang II type I receptor blocker (ARB) — irbesartan— to placebo over a 2-year period...

sponsor: Ministry of Health, France

location: France

Assessment of Small Fiber Neuropathy in Rare Diseases Using Sudoscan

purpose: Sudoscan™ (Impeto Medical, Paris France) uses electrochemical skin conductance as a novel noninvasive method to detect sudomotor dysfunction. Several small studies have recently shown that Sudoscan use in the assessment of small fiber polyneuropathy (in diabetes mellitus) can be performed non-invasively, quickly and effectively. The investigators aim to study the use of Sudoscan in rare disease condition associated with small fiber polyneuropat...

sponsor: Massachusetts General Hospital

location: United States

Clinical Autonomic Disorders: A Training Protocol

purpose: Background: – The autonomic nervous system helps control things that happen automatically in the body, like blood pressure, heart rate, and digestion. When it doesn t work properly, it s called dysautonomia. Researchers want to learn more about dysautonomias and train doctors to learn how to better diagnose them. Objectives: To allow people with autonomic disorders to be evaluated. To help fellows in the NIH Autonomic Dis...

sponsor: National Institute of Neurological Disorders and Stroke (NINDS)

location: United States

Genetics of Ehlers-Danlos Syndrome

purpose: We are planning to collected blood and saliva for DNA extraction to use for genetic testing of children and adults with EDS and their relatives. Medical records from other institutions and clinical notes for visits in Dr. Holick’s clinic will be reviewed to obtain the following information: previous diagnosis at other institutions, age, clinical signs and symptoms of EDS, Joints Hypermobility Syndrome (JHS), , and other metabolic or genetic disor...

sponsor: Boston University

location: United States

Origins and Impact of EDS in Connective Tissues and Skin

purpose: Ehlers-Danlos Syndrome (EDS) is an inherited disease of collagen, found in connective tissues, such as skin. EDS patients suffer from joint and skin problems (skin hyperextensibility, joint hypermobility) along with a large range of other disorders, including, delayed wound healing with atrophic scarring, easy bruising, tissue fragility, gastrointestinal and gum problems. There are many different types of EDS, with different mechanisms of action,...

sponsor: University College London Hospitals

location: United Kingdom

The Comorbidity of Benign Hypermobility Joint Syndrome and Functional Constipation in Children

purpose: Benign Hypermobility Joint Syndrome is a group of inherited abnormalities in the structure of connective tissues, manifested by disturbances in the proportion of collagen. The main symptoms of this syndrome include: laxity of joint capsules and ligaments, hypermobility of the joints, as well as numerous disturbances in the functioning of internal organs that contain connective tissue, including the gastrointestinal tract. Hypermobility of joints...

sponsor: Medical University of Warsaw

location: Poland

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A Pilot Study of Mind-Body Therapy for Chronic Pain in Ehlers-Danlos Syndrome

purpose: This study will assess the effectiveness of mind-body therapy in relieving pain in patients with Ehlers-Danlos syndrome. This syndrome is a hereditary condition caused by a connective tissue defect and is often associated with chronic pain poorly controlled by medication or physical therapy. Mind-body therapy comprises various complementary or alternative medicine techniques such as meditation, guided imagery, stress management, and group psychot...

sponsor: National Human Genome Research Institute (NHGRI)

location: United States

Biomarkers in Vascular Ehlers-Danlos Syndrome (MEDIC)

purpose: The purpose of this study is to determine whether patients with vascular Ehlers-Danlos syndrome present significant and specific changes of arterial endothelial and smooth muscular cell signalling/secretion, in comparison to matched healthy volunteers and patients with spontaneous arterial dissections.

sponsor: Assistance Publique - Hôpitaux de Paris

location: France

Celiprolol in Patients With Ehlers-Danlos Syndrome, Vascular Type

purpose: Ehlers-Danlos syndrome vascular type (EDS-IV) is caused by a genetic defect of collagen type III. Patient die (median 40 yrs) of vascular complications. There is no treatment. We showed that arteries are thin and overloaded in this patients. We test the protective effect of celiprolol on cardiovascular events in a 5 years, randomized, PROBE design

sponsor: Assistance Publique - Hôpitaux de Paris Aventis Pharmaceuticals

location: France

Clinical and Molecular Manifestations of Heritable Connective Tissue Disorders

purpose: The purposes of this study are to identify the genes responsible for inherited connective tissue disorders and learn about the range of medical problems they cause. It will investigate whether specific gene changes cause specific medical problems and will establish diagnostic criteria (signs and symptoms) for the individual syndromes. Children and adults with a known or suspected inherited connective tissue disorder (Marfan, Ehlers-Danlos or S...

sponsor: National Human Genome Research Institute (NHGRI)

location: United States

Clinical and Molecular Manifestations of Heritable Disorders of Connective Tissue

purpose: Background: – Heritable disorders of connective tissue are genetic conditions that can affect the skin and other parts of the body. They are related to mutations in genes that are responsible for building tissues. The symptoms differ among disorders. Researchers want to study which genes may be responsible for different disorders. They will be performing a long-term (up to 10 years) study and a study that requires a single visit. These studies...

sponsor: National Institute on Aging (NIA)

location: United States

Establishment of Local Arterial Stiffness Normal Values (Carotid and Femoral) on Healthy Volunteers Using Supersonic Shear Imaging

purpose: Arterial stiffness is associated with increased risk of cardiovascular events and death. Most of existing technique need dedicated device for arterial stiffness evaluation and indirect calculation of intra arterial pressure. Supersonic Shear Imaging (SSI) is a novel non-invasive technique based on remote palpation of biological tissues that can image with very high temporal resolution (up to 10,000 images/s) and quantify the local viscoelastic...

sponsor: French Cardiology Society

location: France

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Riboflavin Corneal Crosslinking for Brittle Cornea Syndrome and Ehlers-Danlos Syndrome Type VI

purpose: Brittle Cornea Syndrome and Ehlers-Danlos Syndrome (EDS) type VI are rare collagen-connective tissue disorders that predispose affected individuals to the development of perforated corneas from the mildest of eye trauma or even spontaneously. Clinical studies evaluating riboflavin-corneal crosslinking have found that it dramatically increases corneal rigidity. Given the success and safety of riboflavin crosslinking, the investigators believe that...

sponsor: Hadassah Medical Organization

location: Israel

Investigation of Hypermobility, Biomarkers, and Pain Generators in Chronic Pain Patients

purpose: Observational study of axial spine pain and hyperflexibility. Patients will receive physical exam maneuvers (traditional straight leg raise, FABER, facet loading as well as Beighton's hypermobility score) and blood / urine / saliva collection. They will also be separated into pain groups based on their response to injections. A correlation between exam findings and procedure group will be measured.

sponsor: The University of Texas Health Science Center, Houston

location: United States

Molecular Bases of Response to Copper Treatment in Menkes Disease, Related Phenotypes, and Unexplained Copper Deficiency

purpose: Menkes disease and occipital horn syndrome are two forms of copper deficiency that must be diagnosed and treated very early in life to prevent serious developmental problems. However, these and other forms of copper deficiency are not very well understood, and further research is needed to determine whether certain treatments are useful in treating copper deficiency. One such treatment is copper histidine, a copper replacement that can be injecte...

sponsor: Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

location: United States