MSA Study Questionnaire Attached

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*** Multiple System Atrophy Research Study ***

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), s

Hopkins University (Baltimore, land), 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

Please complete and mail 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

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