Multiple System Atrophy Awareness

Spreading awareness worldwide

Some Recent Progress in Therapeutics of MSA

April 15, 2011

The clinical study on the drug Rifampicin for MSA is now open and accepting patients who qualify.

http://rarediseasesnetwork.epi.usf.edu/ARDCRC/studies/6102.htm

How to participate

In order to participate in a study, you must personally contact the study coordinator of any of the participating institutions by phone or by e-mail. Please use the information below to inquire about participation

See the website for more information:

http://rarediseasesnetwork.epi.usf.edu/ARDCRC/studies/6102.htm

“6102 – An Oligo-centered, Randomized, Double-blind, Placebo-controlled Clinical Trial to Assess the Efficacy, Safety, and Tolerability of Rifampicin in Patients with Multiple System Atrophy”


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March 4, 2011

Update from Phillip Low, MD

There is significant activity in the areas of diagnosis and treatment trials of early MSA.  Progress has been facilitated by a combined effort of the National Institute of Health through NINDS which has funded a program project specifically in MSA (P01 NS4 4233; Principal Investigator – Phillip Low MD) and a Autonomic Disorders Rare Disease Consortium (U54 NS0 65736; Principal Investigator – David Robertson MD). We are about to commence our study “Double blind placebo controlled study of Rifampicin in Multiple System Atrophy,”  Principal Investigator, Phillip Low; Co-Prinicipal Investigators: Sid Gilman, David Robertson within a month or so. The goal of this trial is to test if Rifampicin will prevent progression of the disease. NIH funding has been limited so that private funding has been extremely important. My program is most appreciative of the financial support of Lily Shih and her father Mr Shih, in supplementing this treatment trial.

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Go here to register in the patient database to be notified of when the Rifampicin trial will start:

http://rarediseasesnetwork.epi.usf.edu/ARDCRC/studies/index.htm

“6102 – An Oligo-centered, Randomized, Double-blind, Placebo-controlled Clinical Trial to Assess the Efficacy, Safety, and Tolerability of Rifampicin in Patients with Multiple System Atrophy”

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Note:  If anyone would care to make a donation directly to Dr. Low’s research project for the study of the drug Rifampicin in MSA patients please contact:

Mayo Clinic
Contact: Scott Arthur
Department of Development
200 First Street SW
Rochester, MN 55905
Phone: 507-538-7564 Fax: 507-284-1550
E-mail: arthur.scott@mayo.edu

Be sure to mention the “Rifampicin double-blind study” to ensure your gift goes to the right place.

To donate online go to:

Mayo Online Donations

Enter the amount and change the designation to: Other Designation

Beside Other, please type in: “Rifampicin double-blind study”

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April 26, 2010

Some Recent Progress in Therapeutics of MSA
by Phillip Low, MD

The diagnosis and characterization of MSA has significantly improved over the past decade. There is also a better understanding of the mechanisms underlying this disease (pathogenesis). Progress has been facilitated by a combined effort of the National Institute of Health through NINDS which has funded a program project specifically in MSA (P01 NS4 4233; Principal Investigator – Phillip Low MD) and a Autonomic Disorders Rare Disease Consortium (U54 NS0 65736; Principal Investigator – David Robertson MD). Progress is also facilitated by the activities of patient support groups.

For a disease for which there is only treatment of symptoms, we should have 3 treatment trials for MSA this year. Underway is a study entitled “A Multi-centered, Randomized, Double-blind, Placebo-controlled Clinical Trial to Assess the Efficacy, Safety, and Tolerability of Rasagiline Mesylate 1 mg in Patients with Multiple System Atrophy of the Parkinsonian Subtype (MSA-P)”, by Teva Pharmaceutical Industries, Ltd.

A study that is about to commence entitled: “A Phase IIA, multi center, double-blind, randomized, placebo-controlled, parallel-group 12 month study to assess the efficacy, safety, tolerability and pharmcokinetics of AZD3241 in patients with Multiple System Atrophy” also aims to affect the natural history of the disease.

A third study “Double blind placebo controlled study of Rifampicin in Multiple System Atrophy,” Principal Investigator, Phillip Low; Co-Prinicipal Investigators: Sid Gilman, David Robertson. The goal of these trials is to test if these drugs will prevent progression of the disease.

These studies are not likely to help advanced MSA. Indeed the studies will only be open to patients with very early MSA. The importance of these studies is that they will likely lead to additional and better treatments in the future. Studies with intravenous gamma globulin and stem cell therapy are in the exploratory stages. I stress that it is important to maintain a realistic perspective. These studies should not be interpreted as reason for optimism for a cure, but is certainly ground for hope for the future.

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Posted in Research Update.

5 comments

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5 Replies

  1. Dr Gerald Phillips Feb 22nd 2011

    The comments above are most useful. This is an excellent site, very informative and never offering false hope. It took five years to diagnose She-Drager-Syndrome (MSA with myself. Very few Doctors know of this illness. It is important to remember that counultants who you may see about something else will find a brief explanation of your condition from you. THey will not think you are preaching. Hopefully sitrs like this will widen to the medical community.
    Kindest
    Gerald

  2. Dr Gerald Phillips Feb 22nd 2011

    Please forgive my typos: I spelt Shy-Drager-Syndrome as She-DragerSyndrome. Missed out very useful from my part on giving information to consultants you are seeing on other matters. Should also be ‘sites’ like this will widen to the medical community. Actually this is one of my symptoms. Getting typos and grammar written badly.

  3. Kristi Riding Feb 28th 2011

    I was wondering how someone can get on the list for your experimental treatment trials?
    My mother is in the relatively early stages of MSA.

    Thank-you,
    Kristi Riding
    705-722-3122

  4. Dr Gerald Phillips Mar 1st 2011

    Hello
    I live in England. Your website is superb but is heavily biased towards the USA. Is there any way we can get the UNited KIngdom more heavily involved in your project. I would be happy to help in any way I can. I should say that I suffer from MSA myself so have a two pronged and thorough knowledge of the disease.
    Kind wishs
    Gerald

  5. i have msa and being treated by dr watson of the mayo clinic i would like to be part of the study. please send me information on this.