*** IMPORTANT ANNOUNCEMENT ON MSA/SHYDRAGER RESEARCH ***

[Guest guest]

I received this email today from Dr. Cliff Shults of the North American

Multiple System Atrophy Study Group. Your assistance is urgently needed to

help Dr. Shults and his group obtain approval from the NIH for their

proposed study.

If you are willing to travel to participate in this research study all

reasonable travel expenses would be covered. There would be no cost for the

evaluation.

This is the sort of research effort we've been hoping and praying for!

Please, everyone answer this questionnaire and pass it on to other MSA

patients you know of.

Regards,

Pam Bower

pbower@...

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May 20, 2002

Dear Ms. Bower,

In your email of February 10, 2002, you mentioned that the MSA patient

community was very excited about our proposed study and asked how members

could help and indicate their willingness to participate. I have pasted

below a description of how MSA patients can assist us. I hope that you will

distribute this to your members and, if they are so inclined, ask that they

return the questionnaire by regular mail (my other commitments don't allow

me all the time that would be needed to respond to emails and telephone

calls).

Thanks,

Cliff Shults M.D.

Professor of Neurosciences

Univ. of California, San Diego

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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),

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

----------------------------

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