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Studies


Jaclyn

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: physicianlist@dinet.org  

 


Electrographic and Neurohormonal Characteristics of Adolescent Nausea during Tilt-table testing: The ENCHANT Study

Description:  Nausea is common with orthostatic intolerance. Our case-control story measures how stomach electrical activity changes in relation to various serum hormones during tilt-induced syncope. Study participants will undergo tilt-table testing with electrogastrography (EGG), electroencephalography (EEG), quantitative sweat, serial saliva samples, and IV placement for serial blood draws. All research testing is performed at Nationwide Children's Hospital, Columbus, Ohio.

Particpation Requirements: We are recruiting cases and controls. Healthy control subjects will be paid ($200) for their participation. Cases are recruited directly from clinic referrals and will not be paid, but we will share testing results with all patients who participate. Our study does not cover any costs related to travel or lodging or any costs associated with clinic referral or medical care.

Eligibility criteria for all participants:

1. Age 12-21 years

2. Body-mass index 18.5-25 kg/m2

3. Normal cardiac exam

Contol subjects must be in good general health and free of dizziness/lightheadedness, syncope, chronic nausea, anxiety, depression, and chronic medications.

We are currently recruiting patients with syncope who do not have chronic or frequent gastrointestinal complaints such as nausea. We will be recruiting patients with syncope who do have chronic gastrointestinal complaints in near-future. All medicines that can affect tilt-table results or gastrointestinal function will be held at least 5 days prior to testing.

Contact Person: Geoffrey Heyer, MD geoffrey.heyer@nationwidechildrens.org


 

Standing up to POTS, Patients Count and Wittenberg University Launch New Patient Study

The Quality of Life with POTS - Cluster Disorder Survey

This survey was designed by experts who know first-hand about living with POTS and its associated disorders. They are seeking people living with POTS and their healthy friends and family to participate in this survey so they can better understand quality of life issues for people living with Postural Orthostatic Tachycardia Syndrome (POTS). The survey is IRB approved by Wittenberg University. It takes about 20 minutes and you must be 18 or older to particpate. Please note that both POTS patients and non-POTS people are needed for this study.

To learn more about this study or to get started, visit:

Quality of Life with POTS survey

 

 


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

 


Mechanisms of Vasovagal Syncope

We are recruiting participants aged 14-29 years old for a study of postural vasovagal syncope (VVS, postural faint) and neuropathic postural tachycardia syndrome (POTS). Exact mechanisms of illness have remained elusive although our past work shows that with upright posture blood is excessively relocated from the central pool to the splanchnic vasculature in both VVS and neuropathic POTS. This occurs because blood vessel contraction (vasoconstriction) is impaired when upright. We hypothesize that impairment occurs because of excessive production of nitric oxide (NO) which reduces the ability of the nerves to produce vasoconstriction.

If you choose to participate, we will perform a type of testing called lower body negative pressure (LBNP) during which we use a vacuum to redistribute blood to your legs while you remain supine. This simulates many findings of upright postural stress. We will perform simple noninvasive tests. On other days we will also use a technique called intradermal microdialysis in which several tiny tubes are placed in the uppermost layer of the skin, while we simultaneously measure blood flow. Two 3mm biopsy samples will be obtained from the skin of your calf. In addition, we will be administering several drugs - L-NMMA, Phenylephrine, and Sodium Nitroprusside through an IV placed in your arm and combine this with LBNP, along with microneurography that measures Muscle Sympathetic Nerve Activity (MSNA) using an acupuncture-like needle placed in a nerve behind your knee. Testing will take place over 5 days and you will be reimbursed $150 per day.

Further details of the research and representative consent forms can be found on our web-site, syncope.org

Or at our listing on Clinicaltrials.gov - the direct link is http://clinicaltrials.gov/ct2/show/NCT01791816?term=julian+m.+stewart&rank=1

If interested, please reply to: 

Courtney Terilli, Research Coordinator
The Center for Hypotension
Department of Pediatrics
19 Bradhurst Avenue, Suite 1600 South
Hawthorne, New York 10532

courtney_terilli@nymc.edu; Telephone 914-593-8888

 

 


 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

 


 


 



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