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 28, 2002 Report Share Posted May 28, 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 434- 244- > 0018 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 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 434- 244- > 0018 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.