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Studies


edriscoll

Featured below are ongoing studies related to dysautonomia and POTS related illnesses from DINET's team of medical advisors.  We also feature research and ongoing trials from other physician's who specialize in dysautonomia.  To learn more about our medical advisors, please visit the advisor's page here: http://www.dinet.org/aboutus/advisors/  If you are a physician specializing in POTS and other dysautonomia illnesses and would like your research included on this page, please contact DINET at: webmaster@dinet.org


Recruiting: Two new studies open for patients with MSA.  The NYU Dysautonomia Center has 2 new clinical trials to test new drugs that are being developed for the treatment of OH in patients with MSA.  Both compounds work by enhancing the body's levels of norepinephrine.  Both studies are also being carried out at the Autonomic Dysfunction Center at Vanderbilt University.  NYU Dysautonomia Center and Vanderbilt are long time collaborative partners in rare autonomic disorders.  Contact information and more information about the studies can be found in this article. https://dysautonomiacenter.com/2017/04/10/two-new-studies-open-for-patients-with-msa/

 

Recruiting:  Vagal Stimulation in POTS- The Autonomic Inflammatory Reflex (Pilot 3) The purpose of this study is to investigate how the electrical stimulation of a nerve in the skin of your ear lobe (transcutaneous vagal nerve stimulation) affects the way your autonomic nervous system controls your heart rhythm.   Participants must be females between the ages of 18 - 45 with POTS.  To learn more about this study or to participate, visit https://www.rarediseasesnetwork.org/cms/autonomic/6111


Recruiting

STUDY BY DINET'S MEDICAL ADVISOR:  DR. SATISH R. RAJ, MD MSCI 

The BIG POTS Study
Vanderbilt University and Dysautonomia International have partnered to launch the largest international study on Postural Orthostatic Tachycardia Syndrome (POTS). POTS impacts millions around the world, yet no large studies have ever been conducted, until now. This study enables patients to share their experiences directly with researchers, an important and innovative way to study this illness.

The study's lead investigator is Satish R. Raj, MD MSCI, Adjunct Professor of Medicine at Vanderbilt University's Autonomic Dysfunction Center. Dr. Raj says that the information collected as part of this survey "will help us learn more about the possible underlying causes and risk factors for developing POTS, treatments, and the economic, educational and social impact of POTS on patients and their families". Dr. Raj serves on the Medical Advisory Board for DINET and Dysautonomia International. 

The Big POTS survey is open to all patients diagnosed with POTS by a physician. To learn more about the survey or to participate, visit: The BIG POTS survey

Recruiting:    Clinical Autonomic Disorders:  A Training Protocol

The National Institute of Neurological Disorders and Stroke and the National Institutes of Clinical Centers. are conducting this study to learn more about dysautonomias and specifically to use that knowledge to train physicians to better diagnose and treat patients living with this illness.

To participate or learn more about this study, visit the Clinical Trials site.   

 The Results Are In - Clinical Invasive Cardiopulmonary Exercise Testing

From the Journal of the Pulmonary Vascular Research Institute

Unexplained exertional dyspnea caused by low ventricular filling pressures: results from clinical invasive cardiopulmonary exercise testing

To determine whether low ventricular filling pressures are a clinically relevant etiology of unexplained dyspnea on exertion, a database of 619 consecutive, clinically indicated invasive cardiopulomonary exercise tests was reviewed to identify patients with low maximum aerobic capacity.

To read the full article:

ncbi.nlm.nih.gov

News & Information.

Sleep disturbances and POTS  https://ww2.mc.vanderbilt.edu/adc/43572  

 

IMPORTANT INFORMATION:  POTS & Ehlers-Danlos Syndrome

"Postural tachycardia in hypermobile Ehlers-Danlos syndrome: A distinct subtype?" by Miglis MG, Schultz B, and Muppidi S, from the Departments of Neurology and Psychiatry at Stanford University Medical Center.

"It is not clear if patients with postural tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (hEDS) differ from patients with POTS due to other etiologies. We compared the results of autonomic testing and healthcare utilization in POTS patients with and without EDS."

https://www.ncbi.nlm.nih.gov/pubmed/28986003

Edited by edriscoll

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