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Multiple System Atrophy News - January 2003 ______________________________________________________

Table of Contents

1. SUPPORT GROUP NEWS & EVENTS
a. View the Latest News from Shy-Drager.com

b. Annual Ataxia Medical Meeting - February 8, 2003 - Rockville, MD

2. MULTIPLE SYSTEM ATROPHY RESEARCH NEWS
a. World Leaders in MSA Research to meet in Austria - February 2003

b. NEW NIH FUNDED RESEARCH PROJECT: Bionic Baroreflex System for Blood Pressure Control

3. CLINICAL STUDIES RECRUITING PATIENTS WITH AUTONOMIC DISORDERS

a. Positron Emission Tomographic (PET) Scanning of Sympathetic Innervation and Function in Patients with Neurocardiologic Disorders b. Blood Sampling for Neurochemical and Genetic Testing

4. ODDS AND ENDS
a. VIDEO: "Bringing attention to the rare disease Ataxia"

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1. SUPPORT GROUP NEWS

a. View the Latest News Published on the SDS/MSA Support Group

website: http://www.shy-drager.com/research.htm

A recent addition to this page is the full text article "Consensus Statement on the Diagnosis of Multiple System Atrophy".

http://www.shy-drager.com/Consensus%20Statement.htm

 

b. Annual Ataxia Medical Meeting - February 8, 2003 - Rockville, MD

The Chesapeake Chapter of the National Ataxia Foundation Invites you, your family, and friends to attend their Annual Medical Meeting.

EXPLORING ADVANCES IN THE TREATMENT OF "COUSIN NEUROLOGICAL DISORDERS" AND OF THE ATAXIAS

When: 9 AM to 4 PM - Saturday, February 8, 2003

Where: Theatre-Arts Auditorium at the Montgomery College Rockville Campus, 51 Mannakee Street, Rockville, MD 20850.

Phone: 301-279-5000.

The general theme of this year's meeting is Exploring Advances in the Treatment of "Cousin Neurological Disorders" and of the Ataxias. In regard to the ataxias, there will be a discussion of the ongoing clinical trials at NIH of Idebenone for Friedreich's Ataxia, featuring Robert B. Wilson, MD., Ph.D. of the Univ. of Pennsylvania.

Also, Fernando Pagan, MD of NINDS-NIH will discuss trials of the Gluten-free Diet and the Intravenous Immunoglobulin (IVIG) trials.

There will be an open forum discussion, led by Russell Margolis, MD and Stephen Grill, MD, of the progress in the treatments of Huntington's Disease, Parkinson's Disease, and related neurological diseases. Related to this will be a discussion, led by Kathleen Clarence-Smith, MD, PhD of Prestwick Scientific Capital, Inc., of what is involved in drug development, from "translation" of the basic or clinical research findings to the pharmaceutical development of a drug and the costly financial backing needed for such drug development.

The afternoon sessions will deal mostly with the research progress and several movement characteristics of the ataxias. David S. Zee, MD from Johns Hopkins Hospital, Baltimore, will discuss Eye Movements. Amy Bastian, Ph.D. from the Kennedy Krieger Institute, Baltimore, will discuss the Measurements in Movement Disorders.

In order to estimate the correct number of lunches to be provided, please contact either Dick & Martha Sargent at 703-321-9143 or Carole Connor at 301-933-2079 or email cacforpcs@juno.com, by Feb. 3rd.

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2. MULTIPLE SYSTEM ATROPHY RESEARCH NEWS
a. World Leaders in MSA Research to meet in Austria - February 2003

http://www.movementdisorders.org/symposia.html

Atypical Parkinsonian Disorders: From Protein Dysfunction to Therapeutic Intervention

February 20-21, 2003 Department of Neurology,
University Hospital
Innsbruck, Austria

Read the planned meeting agenda here: http://www.movementdisorders.org/pdf/Satz-Einladung.pdf

Program Description

Movement disorder experts are increasingly faced with atypical parkinsonian disorders (APDs) such as multiple system atrophy (MSA), progressive supranuculear palsy (PSP), or corticobasal degeneration (CBD). Until recently, the molecular pathology of APDs remained elusive preventing the development of effective therapeutic interventions. Previous meetings on CBD and MSA addressed clinical, diagnostic and neuropathological aspects of these disorders. During the last five years fundamental insights into the synuclein and/or tau pathology of APDs have led to a new understanding of these disorders as proteinopathies.

European and US MSA study groups were launched in January 2001 aiming at rating scale development, natural history studies, ecogenetic research and ultimately at neuroprotective intervention trials. Recently, the NNIPPS trial consortium in Europe launched a double blind multicentre trial of rilzole in PSP and MSA. The proposed symposium will review the current evidence for abnormal protein handling as primary pathogenic event in APDs; it will also review experimental models and therapeutic strategies in these disorders. The ongoing research activities of the European and US MSA Study Groups and the NNIPPS consortium will be presented.

Meeting Organizer: Gregor Wenning, MD, PhD
Anichstrasse 35, A-6020
Innsbruck, AUSTRIA
TEL: 43 512 504 3850
FAX: 43 512 504 3852
Email: gregor.wenning@uibk.ac.at

Read the planned meeting agenda here: http://www.movementdisorders.org/pdf/Satz-Einladung.pdf

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b. NEW NIH FUNDED RESEARCH PROJECT: Bionic Baroreflex System for Blood Pressure Control

Primary Investigator: Andre Diedrich
Email: andre.diedrich@mcmail.vanderbilt.edu

Project Title: Bionic Baroreflex System for Blood Pressure Control

DESCRIPTION: Patients with multiple system atrophy (MSA), a sporadic and progressive neurodegenerative disorder, suffer from orthostatic hypotension, postprandial hypotension and supine hypertension. Hypotension causes presyncopal symptoms usually within seconds of standing and requires the patient to sit or lie down to prevent syncope. Supine hypertension reduces sleep quality through excessive nocturnal diuresis, and results in blood volume loss during the night, which aggravates orthostatic hypotension during the day. New strategies of treatments are required which take into account this cycling between hypertension and hypotension. Recent studies in our laboratory have yielded the unexpected observation that sympathetic activity is present in MSA, but is not subject to normal control mechanisms. This sympathetic activity produces inappropriate supine hypertension, but is not able to prevent the profound orthostatic hypotension. The identification of residual sympathetic activity in MSA has important implications for new therapeutic approaches. We hypothesize that a bionic baroreflex system based on electrical epidural spinal stimulation will help to replace the missing control of sympathetic activity by the vasomotor center. Preliminary data in animals showed that such a system maintained blood pressure during orthostatic stress.

The purpose of this grant proposal is to search for an effective and practical bionic baroreflex system for patients with MSA and baroreflex failure. First, we will develop a prototype bionic baroreflex control system using baroreflex-denervated rats. Then, the system will be applied to control artificially, the muscle sympathetic nerve activity in patients who already have an epidural electrical stimulator in place for the control of chronic pain. A Phase II study would involve studies in animals and in patients with MSA to determine the long-term efficacy of the bionic baroreflex system in improving blood pressure control.

Project Start: 15-AUG-2002
Project End: 31-JUL-2003

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3. CLINICAL TRIALS RECRUITING PATIENTS WITH AUTONOMIC DISORDERS
a. Positron Emission Tomographic (PET) Scanning of Sympathetic Innervation and Function in Patients with Neurocardiologic Disorders

Summary: This study is designed to use PET scans in order to measure activity of the sympathetic nervous system. The sympathetic nervous system is the portion of the nervous system that maintains a normal supply of blood and fuel to organs during stressful situations.
PET scan or Positron Emission Tomography is an advanced form of an X-ray. It is used to detect radioactive substances in the body. During this study researchers plan to inject small amounts of the radioactive drug fluorodopamine into patients. Fluorodopamine is very similar to the chemicals found in the sympathetic nervous system. It can attach to sympathetic nerve endings and allow researchers to view them with the aid of a PET scan. One area of the body with many sympathetic nerve endings is the heart. After giving a dose of fluorodopamine, researchers will be able to visualize all of the sympathetic nerve endings involved in the activity of the heart. In addition, this diagnostic test will help researchers detect abnormalities of the nervous system of patient's hearts.

Contacts:
Patient Recruitment and Public Liaison Office
Building 61
10 Cloister Court
Bethesda, Maryland 20892-4754
Toll Free: 1-800-411-1222
TTY: 301-594-9774 (local),1-866-411-1010 (toll free)
Fax: 301-480-9793
Electronic Mail:prpl@mail.cc.nih.gov

For more details please see: http://clinicalstudies.info.nih.gov/detail/A_1994-N-0186.html

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b. Blood Sampling for Neurochemical and Genetic Testing

Summary: This study involves sampling blood from both normal volunteers and patients with diseases known or suspected to involve body chemicals called catecholamines. The blood will be used to establish normal values for plasma levels of catecholamines and related neurochemicals; to test for abnormal neurochemical patterns in patients; and to establish a "bank" of DNA from normal volunteers and from patients to be used in future studies about possible alterations of catecholamine-related genes.

Contacts:
Patient Recruitment and Public Liaison Office
Building 61
10 Cloister Court
Bethesda, Maryland 20892-4754
Toll Free: 1-800-411-1222
TTY: 301-594-9774 (local),1-866-411-1010 (toll free)
Fax: 301-480-9793
Electronic Mail:prpl@mail.cc.nih.gov

For more details please see: http://clinicalstudies.info.nih.gov/detail/A_2000-N-0008.html

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4. ODDS & ENDS

a. VIDEO: "Bringing attention to the rare disease Ataxia"

The Cerebellar form of Multiple System Atrophy is considered to fall under the family of disorders called "Ataxia". View this brief video that discusses Ataxia at: http://www.ataxia.org/786.html

Also be sure to check out the National Ataxia Foundation website at: http://www.ataxia.org

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Please visit http://groups.yahoo.com/group/shydrager

Local MSA Support Groups & Contacts can be found here: http://www.shy-drager.com/area%20Support%20Groups.htm

To view past issues of Multiple System Atrophy News please go to: http://americanautonomicsociety.org and click on "Patient Resources" then on "Multiple System Atrophy News"

Did you know? Much of the research news about MSA comes from leads from you, our readers. Please, if you know of any research studies accepting MSA patients kindly share this information by contacting the MSA News editor at pbower@accesscable.net ______________________________________________________

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