Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Bill behave! Re: MSA RESEARCH STUDY > Pam, > > I agree about the more positive note ) But isn't Dr. Shults a neurologist > ) I agree also that getting as many people involved with this study as > possible, could help find an eventual cure for MSA. > > Hugs back, Bill Werre > > -------------------------------------- > > Pam Bower wrote: > > > I'd like to see us get back on a more positive note on the list. Remember > > the MSA/Shy-Drager research study questionnaire that came to us out of the > > blue last week? I know I'm not the only one who is excited about it. I've > > heard lots of you have filled it out and sent it in. Even if you put a NO > > beside the question about whether you are willing or able to travel I think > > it's REALLY, REALLY important that Dr. Shults knows who you are and where > > you are located. We don't know for sure that those 7 centers will be the > > only ones involved in this study. We can all make a positive contribution > > to MSA research by filling out the questionnaire. > > > > Hugs, > > Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Bill behave! Re: MSA RESEARCH STUDY > Pam, > > I agree about the more positive note ) But isn't Dr. Shults a neurologist > ) I agree also that getting as many people involved with this study as > possible, could help find an eventual cure for MSA. > > Hugs back, Bill Werre > > -------------------------------------- > > Pam Bower wrote: > > > I'd like to see us get back on a more positive note on the list. Remember > > the MSA/Shy-Drager research study questionnaire that came to us out of the > > blue last week? I know I'm not the only one who is excited about it. I've > > heard lots of you have filled it out and sent it in. Even if you put a NO > > beside the question about whether you are willing or able to travel I think > > it's REALLY, REALLY important that Dr. Shults knows who you are and where > > you are located. We don't know for sure that those 7 centers will be the > > only ones involved in this study. We can all make a positive contribution > > to MSA research by filling out the questionnaire. > > > > Hugs, > > Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Bill behave! Re: MSA RESEARCH STUDY > Pam, > > I agree about the more positive note ) But isn't Dr. Shults a neurologist > ) I agree also that getting as many people involved with this study as > possible, could help find an eventual cure for MSA. > > Hugs back, Bill Werre > > -------------------------------------- > > Pam Bower wrote: > > > I'd like to see us get back on a more positive note on the list. Remember > > the MSA/Shy-Drager research study questionnaire that came to us out of the > > blue last week? I know I'm not the only one who is excited about it. I've > > heard lots of you have filled it out and sent it in. Even if you put a NO > > beside the question about whether you are willing or able to travel I think > > it's REALLY, REALLY important that Dr. Shults knows who you are and where > > you are located. We don't know for sure that those 7 centers will be the > > only ones involved in this study. We can all make a positive contribution > > to MSA research by filling out the questionnaire. > > > > Hugs, > > Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Pam, I agree about the more positive note ) But isn't Dr. Shults a neurologist ) I agree also that getting as many people involved with this study as possible, could help find an eventual cure for MSA. Hugs back, Bill Werre -------------------------------------- Pam Bower wrote: > I'd like to see us get back on a more positive note on the list. Remember > the MSA/Shy-Drager research study questionnaire that came to us out of the > blue last week? I know I'm not the only one who is excited about it. I've > heard lots of you have filled it out and sent it in. Even if you put a NO > beside the question about whether you are willing or able to travel I think > it's REALLY, REALLY important that Dr. Shults knows who you are and where > you are located. We don't know for sure that those 7 centers will be the > only ones involved in this study. We can all make a positive contribution > to MSA research by filling out the questionnaire. > > Hugs, > Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Pam, I agree about the more positive note ) But isn't Dr. Shults a neurologist ) I agree also that getting as many people involved with this study as possible, could help find an eventual cure for MSA. Hugs back, Bill Werre -------------------------------------- Pam Bower wrote: > I'd like to see us get back on a more positive note on the list. Remember > the MSA/Shy-Drager research study questionnaire that came to us out of the > blue last week? I know I'm not the only one who is excited about it. I've > heard lots of you have filled it out and sent it in. Even if you put a NO > beside the question about whether you are willing or able to travel I think > it's REALLY, REALLY important that Dr. Shults knows who you are and where > you are located. We don't know for sure that those 7 centers will be the > only ones involved in this study. We can all make a positive contribution > to MSA research by filling out the questionnaire. > > Hugs, > Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Pam, I agree about the more positive note ) But isn't Dr. Shults a neurologist ) I agree also that getting as many people involved with this study as possible, could help find an eventual cure for MSA. Hugs back, Bill Werre -------------------------------------- Pam Bower wrote: > I'd like to see us get back on a more positive note on the list. Remember > the MSA/Shy-Drager research study questionnaire that came to us out of the > blue last week? I know I'm not the only one who is excited about it. I've > heard lots of you have filled it out and sent it in. Even if you put a NO > beside the question about whether you are willing or able to travel I think > it's REALLY, REALLY important that Dr. Shults knows who you are and where > you are located. We don't know for sure that those 7 centers will be the > only ones involved in this study. We can all make a positive contribution > to MSA research by filling out the questionnaire. > > Hugs, > Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 I missed that note somewhere along the way. Was it just for current patients? -- " You have to wonder about humans, they think God is dead and Elvis is still alive! " Anon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Barb, ) Yes, you and I are not needed as they want to try to find patients who they can follow for something like five years (see below). This is extremely good for people who are still walking or recently moving to wheelchairs. To my knowledge previous studies have looked at all movement disorders or all autonomic failure rather than specifically targeting MSA. Take care, Bill ----------------- Barb wrote: > I missed that note somewhere along the way. Was it just for current > patients? > > -- > " You have to wonder about humans, they think God is dead > and Elvis is still alive! " Anon *** 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 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...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Barb, ) Yes, you and I are not needed as they want to try to find patients who they can follow for something like five years (see below). This is extremely good for people who are still walking or recently moving to wheelchairs. To my knowledge previous studies have looked at all movement disorders or all autonomic failure rather than specifically targeting MSA. Take care, Bill ----------------- Barb wrote: > I missed that note somewhere along the way. Was it just for current > patients? > > -- > " You have to wonder about humans, they think God is dead > and Elvis is still alive! " Anon *** 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 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...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Barb, ) Yes, you and I are not needed as they want to try to find patients who they can follow for something like five years (see below). This is extremely good for people who are still walking or recently moving to wheelchairs. To my knowledge previous studies have looked at all movement disorders or all autonomic failure rather than specifically targeting MSA. Take care, Bill ----------------- Barb wrote: > I missed that note somewhere along the way. Was it just for current > patients? > > -- > " You have to wonder about humans, they think God is dead > and Elvis is still alive! " Anon *** 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 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...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Pam and , My dad has responded to the survey and is willing to travel to participate. Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Great ! I actually just spoke with Dr. Shults on the phone. He told me a bit of the history of his group. He first proposed forming the North American MSA Study Group a couple years ago at one of the Neurology Society meetings. He actually got the idea from a patient with MSA who was wondering why no researchers were interested in it. I told him we were thrilled that he'd got the group of researchers collaborating together on this and he said he was surprised actually that no one had ever thought of it before. He also noted that they are working very closely with the European MSA Study Group and will be sharing information with them. He is most interested in getting people with clinically probable MSA and following them for 5 years. Those who have not been given a clear clincal diagnosis wouldn't be included in this study. They need to go with the data they are most sure of in order to figure out this disease. He said he'd already received the first batch of questionnaires in the mail on Friday. I asked him if he thought there was already a possible treatment out there for MSA... he said it was hard to say for sure... there are a few promising things being tried for Parkinson's right now that could have some potential. Clinical trials on MSA patients can't go ahead on any large scale until this ground work is done first... i.e.. trying to better understand the mechanism of cell death in MSA and trying to determine if there are environmental risk factors. He stressed that they really have to proceed in a methodical fashion so that they'd be able to determine if there is an appropriate rationale for trying various drugs. He mentioned that there was still a possibility other research centers could be added on.. it would depend on the funding. Hugs, Pam MSA RESEARCH STUDY > > > I'd like to see us get back on a more positive note on the list. Remember > the MSA/Shy-Drager research study questionnaire that came to us out of the > blue last week? I know I'm not the only one who is excited about it. I've > heard lots of you have filled it out and sent it in. Even if you put a NO > beside the question about whether you are willing or able to travel I think > it's REALLY, REALLY important that Dr. Shults knows who you are and where > you are located. We don't know for sure that those 7 centers will be the > only ones involved in this study. We can all make a positive contribution > to MSA research by filling out the questionnaire. > > > Hugs, > Pam > > > Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 The application for Speedy has been mailed as well. Marilyn in TN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 -Dear Pam: I can understand why dr. shults wants study participants with " probable " dxs. However, since I'm really struggling to get some clarification within the next couple months (and it may happen) i'd like to know how the study will be recruiting participants. Even if no therapeutic interventions come out of this study, I know that natural history studies are invaluable and utterly critical. Thanks, Barb -- In shydrager@y..., " Pam Bower " wrote: > Great ! I actually just spoke with Dr. Shults on the phone. > > He told me a bit of the history of his group. He first proposed forming the > North American MSA Study Group a couple years ago at one of the Neurology > Society meetings. He actually got the idea from a patient with MSA who was > wondering why no researchers were interested in it. > > I told him we were thrilled that he'd got the group of researchers > collaborating together on this and he said he was surprised actually that no > one had ever thought of it before. He also noted that they are working very > closely with the European MSA Study Group and will be sharing information > with them. > > He is most interested in getting people with clinically probable MSA and > following them for 5 years. Those who have not been given a clear clincal > diagnosis wouldn't be included in this study. They need to go with the data > they > are most sure of in order to figure out this disease. He said he'd already > received the first > batch of questionnaires in the mail on Friday. > > I asked him if he thought there was already a possible treatment out there > for MSA... he said it was hard to say for sure... there are a few promising > things being tried for Parkinson's right now that could have some potential. > Clinical trials on MSA patients can't go ahead on any large scale until this > ground work is done first... i.e.. trying to better understand the mechanism > of cell death in MSA and trying to determine if there are environmental risk > factors. He stressed that they really have to proceed in a methodical > fashion so that they'd be able to determine if there is an appropriate > rationale > for trying various drugs. > > He mentioned that there was still a possibility other research centers could > be added on.. it would depend on the funding. > > Hugs, > Pam > > MSA RESEARCH STUDY > > > > > > I'd like to see us get back on a more positive note on the list. Remember > > the MSA/Shy-Drager research study questionnaire that came to us out of the > > blue last week? I know I'm not the only one who is excited about it. > I've > > heard lots of you have filled it out and sent it in. Even if you put a NO > > beside the question about whether you are willing or able to travel I > think > > it's REALLY, REALLY important that Dr. Shults knows who you are and where > > you are located. We don't know for sure that those 7 centers will be the > > only ones involved in this study. We can all make a positive contribution > > to MSA research by filling out the questionnaire. > > > > > > Hugs, > > Pam > > > > > > Sennewald Charlottesville, Virginia 434-244- 0018 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2002 Report Share Posted May 29, 2002 I sent in mine. i am very excited about the study. nancy m Pam Bower wrote: > > I'd like to see us get back on a more positive note on the list. Remember > the MSA/Shy-Drager research study questionnaire that came to us out of the > blue last week? I know I'm not the only one who is excited about it. I've > heard lots of you have filled it out and sent it in. Even if you put a NO > beside the question about whether you are willing or able to travel I think > it's REALLY, REALLY important that Dr. Shults knows who you are and where > you are located. We don't know for sure that those 7 centers will be the > only ones involved in this study. We can all make a positive contribution > to MSA research by filling out the questionnaire. > > Hugs, > Pam > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2002 Report Share Posted May 29, 2002 I sent in mine. i am very excited about the study. nancy m Pam Bower wrote: > > I'd like to see us get back on a more positive note on the list. Remember > the MSA/Shy-Drager research study questionnaire that came to us out of the > blue last week? I know I'm not the only one who is excited about it. I've > heard lots of you have filled it out and sent it in. Even if you put a NO > beside the question about whether you are willing or able to travel I think > it's REALLY, REALLY important that Dr. Shults knows who you are and where > you are located. We don't know for sure that those 7 centers will be the > only ones involved in this study. We can all make a positive contribution > to MSA research by filling out the questionnaire. > > Hugs, > Pam > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 --- Pam: I sent Pat's data in to Dr. Shulz and he called. I was not home but our care-giver said he was interested. Not sure what that meant but at least he called. Keep up the great work. Al > wondering why no researchers were interested in it. > > I told him we were thrilled that he'd got the group of researchers > collaborating together on this and he said he was surprised actually that no > one had ever thought of it before. He also noted that they are working very > closely with the European MSA Study Group and will be sharing information > with them. > > He is most interested in getting people with clinically probable MSA and > following them for 5 years. Those who have not been given a clear clincal > diagnosis wouldn't be included in this study. They need to go with the data > they > are most sure of in order to figure out this disease. He said he'd already > received the first > batch of questionnaires in the mail on Friday. > > I asked him if he thought there was already a possible treatment out there > for MSA... he said it was hard to say for sure... there are a few promising > things being tried for Parkinson's right now that could have some potential. > Clinical trials on MSA patients can't go ahead on any large scale until this > ground work is done first... i.e.. trying to better understand the mechanism > of cell death in MSA and trying to determine if there are environmental risk > factors. He stressed that they really have to proceed in a methodical > fashion so that they'd be able to determine if there is an appropriate > rationale > for trying various drugs. > > He mentioned that there was still a possibility other research centers could > be added on.. it would depend on the funding. > > Hugs, > Pam > > MSA RESEARCH STUDY > > > > > > I'd like to see us get back on a more positive note on the list. Remember > > the MSA/Shy-Drager research study questionnaire that came to us out of the > > blue last week? I know I'm not the only one who is excited about it. > I've > > heard lots of you have filled it out and sent it in. Even if you put a NO > > beside the question about whether you are willing or able to travel I > think > > it's REALLY, REALLY important that Dr. Shults knows who you are and where > > you are located. We don't know for sure that those 7 centers will be the > > only ones involved in this study. We can all make a positive contribution > > to MSA research by filling out the questionnaire. > > > > > > Hugs, > > Pam > > > > > > Sennewald Charlottesville, Virginia 434-244- 0018 Quote Link to comment Share on other sites More sharing options...
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