Guest guest Posted October 3, 2002 Report Share Posted October 3, 2002 Regarding the message below from Cliff Shults: Many of us may have already received a call from him, but we applied for the study and Dr. Shults called last week to let us know that the Grant Proposal is at the NIH right now, and they hope to begin the study in the summer of 2003. They have also added another testing site at Baylor Medical in Houston, TX, which is great news for us, and hopefully will encourage some more folks in our region to apply for the study. Maciejewski Message: 19 Date: 1 Oct 2002 19:15:34 -0000 From: shydrager Subject: File - MSA Research Study *** MSA Research Study Announcement *** May 20, 2002 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 Department of Neurosciences 0662 Univ. of California San Diego - School of Medicine 9500 Gilman Drive La Jolla, CA 92093-0662 ---------------------------- 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. ______________________________________________________________________ __ ---------------------------------------------------------------------- ---------- Cliff Shults, MD Professor of Neurosciences, UCSD Department of Neurosciences 0662 Univ. of California San Diego - School of Medicine 9500 Gilman Drive La Jolla, CA 92093-0662 ________________________________________________________________________ ________________________________________________________________________ Quote Link to comment Share on other sites More sharing options...
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