Recruiting near me | oneedsvoice

welcome to oneEDSvoice

- a positively charged Ehlers Danlos Syndrome community.
  • join today!

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

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

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

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

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

location: United Kingdom

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

view all (7)