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The North American Multiple System Atrophy (MSA) Study Group is
working to develop a comprehensive research effort into MSA, and the
clinical part of the research will be carried out at seven medical
centers in the United States.  These centers include the University
of California, San Diego (La Jolla, California), Parkinson's
Institute (Sunnyvale, California), Mayo Clinic (Rochester,
Minnesota), University of Michigan (Ann Arbor, Michigan), Johns
Hopkins University (Baltimore, Maryland), University of Pennsylvania
(Philadelphia, Pennsylvania), and University of Rochester (Rochester,
New York).

A major part of this effort will be to evaluate 150 MSA patients with
two examinations each year for up to five years at one of the seven
clinical centers.  Patients with MSA will also be asked to identify
two non-blood relatives (spouses or in-laws) who would be willing to
be evaluated once. MSA patients will also be asked to participate in
a telephone interview, which will try to identify factors, such as
diet or exposure to certain chemicals, that might cause MSA.

Our proposal to the National Institutes of Health for support has not
yet received funding. Reviewers of our proposed research questioned
whether 150 MSA subjects would be willing and able to be evaluated
two times each year.  To respond to this concern our group would like
to identify MSA patients who would be willing to come to one of the
above centers two times each year for an evaluation.  We realize
after a few years travel may become very difficult for some MSA
patients, and then we will try to obtain the needed information
through a telephone call. These evaluations will not replace the
ongoing care that the MSA patient is receiving from her/his
physician.

If you are interested in possibly participating in this study once it
has received funding, please complete the questionnaire, which is
pasted below and also enclosed as an attachment, and mail (please do
not use email) to

Cliff Shults M.D.
Department of Neurosciences 0662
Univ. of California San Diego - School of Medicine
9500 Gilman Drive
La Jolla, CA 92093-0662

The information that you provide will remain confidential.  Dr. Shults
will try to call you within two weeks of receipt of the questionnaire
to answer questions regarding the planned study and clarify any
questions that he has regarding the information that you provided.

Sincerely,

Cliff Shults, M.D.
Professor of Neurosciences
University of California, San Diego


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Questions for MSA patients interested in the study  "Pathogenesis and
Diagnosis of Multiple System Atrophy" - #010906

1. Name _____________________________________________

2. Address____________________________________________

___________________________________________________

3. Telephone number____________________________________

4. Date of birth_________________________________________

5. Gender_____________________________________________

6. Have you been diagnosed by a doctor to have multiple system
atrophy (MSA)?

YES_____     NO_____    If so, what year was the diagnosis made?
_________

7. Was the doctor a neurologist?

YES_____     NO_____

8. Would you be willing and able come to one of the participating
medical centers to be seen by an expert in multiple system atrophy
two times each year for up to five years?  Reasonable travel expenses
would be covered. There would be no cost for the evaluation.

YES_____     NO_____

9. If so, at which site

San Diego, CA_____

Sunnyvale, CA_____

Rochester, MN_____

Ann Arbor, MI_____

Baltimore, MD_____

Philadelphia, PA_____

Rochester, NY_____

10. Do you think that your spouse and/or some of your in-laws would be
willing to come to come to one of these centers once for an
evaluation?

YES_____     NO_____

11. Do you think that you, your spouse and some of your in-laws would
be willing to participate in a telephone survey investigating
possible risk factors for MSA, by asking about work, hobbies, health,
life style and family medical history?

YES_____     NO_____

12. Would you be willing to travel by airplane to a medical center
for a detailed evaluation of your autonomic system, which is the part
of the nervous system that controls blood pressure, urinary function
and bowel function?

YES_____     NO_____

13. Would you be willing to give a blood sample to study your DNA for
a genetic cause of MSA?

YES_____     NO_____

14. Do you have slowness of movement?  YES_____     NO_____

15. Do you have stiffness in your muscles? YES_____     NO_____

16. Do you have extra movements such as shaking, tremor or jerks?
YES_____     NO_____

17. Do you have faintness or do you pass out? YES_____     NO_____

18. Do you have problems with control of urination (your bladder ) ?
YES_____     NO_____

19. Do you have problems with coordination of your arms?
YES_____     NO_____

20. Would you be willing to have your doctor send your medical
records to Dr. Shults for review? YES_____     NO_____

21. If you are willing to allow Dr Shults to review your medical
record for research purposes, he will mail to you a "Release of
Medical Records" form, which will allow your doctor to send your
medical records related to MSA to Dr. Shults.  Please indicate
whether you would be willing allow your physician to send your
medical records related to MSA to  Dr. Shults.
YES_____     NO_____


22. Please list any other medical problems you have:










23. Please list your medications.


______________________________________________________________________
__

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Cliff Shults, MD
Professor of Neurosciences, UCSD

Department of Neurosciences, 0662
UCSD School of Medicine
9500 Gilman Drive
La Jolla, California 92093-0662

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