Patient Resources
Ongoing Clinical Studies
Clinical research is needed to advance our knowledge about the cause of
disease and to develop new treatments. Although progress is being done,
medical research is often a slow process and it is not certain that patients who
volunteer will directly benefit from the research they participate in. It
is important that they understand the potential benefits and risks before
deciding to participate.
In the following listing, a brief description of ongoing clinical studies is
provided, along with contact information.
Physicians and patients should recognize
that the American Autonomic Society does not endorse or recommend
particular studies.
You can obtain general information about clinical research
here
If you are a member of the society, and want to be
included in this listing, click here
Multicenter Trials:
New
Chelsea Pharmaceuticals is sponsoring a trial to determine the safety and efficacy of droxidopa for the treatment of orthostatic hypotension. For more information click here
Geographical Listing:
United States
AL,
AR,
AZ,
CA,
CO,
CT,
DC,
FL,
GA,
HI,
IA,
IL,
IN,
KS,
KY,
LA,
MA,
MD,
MI,
MN,
MO,
MS,
NC,
ND,
NE,
NH,
NJ,
NM,
NV,
NY,
OH,
OK,
OR,
PA,
PR,
RI,
SC,
SD,
TN,
TX,
UT,
VA,
VT,
WA,
WI,
WV,
Elsewhere
Canada, Colombia,
Dominican Republic, Germany,
Greece,
Israel,
Italy, Japan, Mexico,
Netherlands, New Zealand, Spain,
Taiwan, United Kingdom
United States
Research Study on
Dizziness
Volunteers wanted
for a research study that evaluates the effects of a breathing device on blood
pressure control in subjects diagnosed with orthostatic hypotension.
Study evaluates the effects of a breathing
device that improves circulation on blood pressure and blood flow in the brain
during standing.
Looking for 20
participants (age 40-85 years) with:
· Low blood pressure while
standing
· Fainting
or dizziness
· Orthostatic
hypotension
Beth Israel Deaconess Medical Center, Boston
If interested,
please call:
617-667-1777 Chelsea Kantor
Abnormalities in Regulation of Blood Flow in Posturla Tachycardia
Syndrome
We are seeking patients aged 15-29 years old with postural tachycardia
syndrome (POTS) for an investigation of abnormalities of regulation of blood
flow. Many people are unable to remain upright for long because of symptoms
such as dizziness, nausea and headache. This may occur on a day-to-day basis
and may severely compromise lifestyle. The most common cause of this condition
is the postural tachycardia syndrome (POTS). POTS is defined by an abnormal
increase in heart rate (“tachycardia”) and symptoms that occur when upright
(therefore “postural”).
POTS has many causes, all related to an abnormal decrease in
the amount of blood returning to the heart. It is a problem in blood flow
regulation. Blood flow regulation is partly due to the autonomic nervous
system and partly due to local factors. It is these local factors that we are
currently studying.
Your own doctor can rule out other illnesses which can
produce similar symptoms. In addition you may have seen a cardiologist, a
neurologist, or an endocrinologist. Tests such as tilt table tests may have
already been performed. Some of these tests may be repeated.
However, we will perform other minimally invasive tests that
are not ordinarily available to your doctor. They are, however, all approved
ways of measuring how blood vessels work. The tests performed during the study
may help us determine what treatment is best for you.
If you would like to take part
in this study, please read further at our website,
www.syncope.org where there is a link to
detailed study information. Then, please get in touch with us. The study
coordinator will contact you to arrange for an appointment for the study.
Testing lasts two days. The study may help to determine the specific
biochemical causes of POTS and will point towards improved medical therapy for
young patients.
Address and Contact Information:
Nicolette Walters, Research Coordinator
Telephone: (914) 593-8888
email:
Nicolette_Walters@NYMC.edu
Julian M. Stewart, M.D., Ph.D.
Director, The Center for Hypotension
Maria Fareri Children's Hospital
New York Medical College
Valhalla, New York
Telephone: (914) 593-8888
email: stewart@nymc.edu
Vascular Dysfunction in Chronic Fatigue Syndrome
We are investigating “Vascular Dysfunction in CFS” in the young. This means problems with blood vessels. In many young CFS patients we have already demonstrated a circulatory problem called postural tachycardia syndrome or POTS. Our understanding of the mechanisms of POTS is incomplete and not all young CFS patients have POTS. We have proposed that even though some CFS patients do not have POTS, they may still have problems with small blood vessels that can be detected in skin.
When you come for your testing, we will perform a type of tilt testing to determine whether you have POTS or not. We will also determine the type of POTS. If you do not have POTS, we will complete testing in two days using a technique called intradermal microdialysis which is explained in the consent and in the website (www.syncope.org) .
If you agree and have CFS with POTS we invite you to stay with us for 4 days of testing which includes testing of potential treatments.
Characteristics of the patients (inclusion/exclusion criteria in lay terms)
Age 15-29 years with chronic fatigue syndrome. No other systemic illnesses.
Contact Information: Courtney Terilli BS, RN Nurse Research Coordinator
Courtney_Terilli@nymc.edu
Julian M. Stewart, M.D., Ph.D.
Director, The Center for Hypotension
Maria Fareri Children's Hospital
New York Medical College
Valhalla, New York
Telephone: (914) 593-8888
email: stewart@nymc.edu
Causes and Treatment of Autonomic Failure
The goal of this study is to investigate the causes leading
to primary disorders of the autonomic nervous system (e.g., Pure Autonomic
Failure, Shy Drager syndrome or MSA), and to develop new treatment for the
blood pressure problems that develop in these patients (low blood pressure on
standing, high blood pressure while lying down).
Patients with a fall in blood pressure of at least 30
points on standing.
Contact information:
Bonnie Black , RN
AA-3228 MCN
Vanderbilt University
Nashville, TN 37232
bonnie.black@vanderbilt.edu
See also our website:
http://www.mc.vanderbilt.edu/gcrc/adc/index.html
Gender & Orthostatic
Intolerance: Mechanisms and Therapy
The purposes of this clinical research are 1) to study why patients with
Postural Orthostatic Tachycardia Syndrome (POTS) are primarily young women; and
2) to seek an effective therapy for the patients with POTS. This research is
being done because factors contributing to orthostatic intolerance (difficulty
tolerating standing upright) remain unclear. In addition, whether exercise
training can be regarded as an effective therapy for patients with POTS compared
with standard pharmacologic therapies (such as using FDA approved drugs to slow
down pulse or to increase body fluid volume) needs to be determined.
Patient
characteristics:
If you are a
premenopausal woman and have had intolerable light-headedness, dizziness,
weakness, and even pass out when standing upright, and these symptoms have been
present for over 6 months; if after standing for 5 to 10 minutes, your heart
rate increases more than 30 beats per minute or your heart rate is over 120
beats per minute; if your upright plasma norepinephrine (adrenaline-like
substance) is very high (over 600 pg/ml); if there are no known causes such as
dehydration, medications, a debilitating disease, etc., and you are otherwise
healthy, you are potentially eligible for this research.
Contact
Information:
Diane
Bedenkop, R.N.
Institute
for Exercise and Environmental Medicine at Presbyterian Hospital of
Dallas
The University of Texas Southwestern
Medical Center at Dallas
7232
Greenville Avenue, Suite 435
Dallas, Texas 75231
Phone: (214)
345-4654
Fax: (214) 345-4618
Email: DianeBedenkop@texashealth.org
Disease on
interest (check all that apply)
X
POTS/Orthostatic Intolerance
__ Pure
autonomic failure
__ Multiple System Atrophy/Shy Drager
__ Neurogenic/vasovagal syncope
__ Diabetes
__ Familial Dysautonomia
Dominican Republic-
Return to Index
Norepinephrine transporter and neurocardiogenic
syncope
The study investigates the
relevance of the norepinephrine transporter for the occurrence of syncope
during head-up tilt.
Patients with recurrent syncope will undergo a detailed screening including
a head-up tilt test to make a diagnosis of the suspected cause of syncope.
Patients with confirmed neurocardiogenic syncope during head-up tilt will
then be tested twice on two separate days, in a double-blind, randomized,
cross-over study, once after the ingestion of reboxetine, and once after
placebo. Reboxetine is a drug that selectively inhibits the reuptake of
norepinephrine. Reboxetine is approved in Germany for the treatment of
depression.
Testing consists of a serious of autonomic function tests, a head-up tilt
test, and repeated blood samples.
Characteristics of the
patients (inclusion/exclusion criteria in lay terms)
Men or women, age 18 – 45.
No severe preexisting conditions (will be assessed upon first consultation).
Contact Information:
Dr. Christoph Schroeder
Franz-Volhard Clinical Research Center
Medical University Charité
Campus Buch
Wiltbergstr. 50
13125 Berlin
Germany
Tel.: +49 30 9417-2581
Fax: +49 30 9417-2265
Email: schroeder@fvk.charite-buch.de
Orthostatic intolerance, Orthostatic
Hypotension in Children
Patients with orthostatic symptoms are properly diagnosed by active
standing and tilting test with portapres and NIRS, and are treated using a
counter-pressure garment (an inflatable abdominal band) in addition to
diet and medication.
Patient characteristics:
Having orthostatic symptoms or chronic fatigue with or without school
absenteeism
Contact Information:
www.inphs.gr.jp
Disease on interest (check all that apply)
_x_POTS/Orthostatic Intolerance
_x_Pure autonomic failure
__Multiple System Atrophy/Shy Drager
_x_Neurogenic/vasovagal syncope
__Diabetes
__Familial Dysautonomia
__Others: