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

[Guest guest]

I am so excited to hear about this research and even happier to see

that there is a site in the West. San Diego is only a six hour drive

from our home and we are filling out the forms right away. It is

wonderful to feel like you can do something rather than sitting

around waiting to see what body function is going to be affected

next. I only hope that our participation will help future generations

and possibly help those with MSA today. For those who's loved ones

have already passed on, please know how much we appreciate your

participation in this group for it is through this list that we have

this opportunity, it is through your continuing love and caring that

this site is seen as an avenue to find participants. We all depend

on your knowledge and encouragement and so we return here and find

out about the latest research. How can we thank you enough. You and

your loved ones have in a special way made this possible for many of

us.

Thank you, Jan and Jerry

> 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@a...

>

>

> ----------------------------

>

> 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

>

>

> ----------------------------

>

>

> 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.

>

>

>

>

>

______________________________________________________________________

> __

>

>

>

>

>

>

>

>

>

>

>

>

> --------------------------------------------------------------------

--

> ----------

>

>

>

> Cliff Shults, MD

> Professor of Neurosciences, UCSD

>

> Department of Neurosciences, 0662

> UCSD School of Medicine

> 9500 Gilman Drive

> La Jolla, California 92093-0662

[Guest guest]

ty joe truly sad