Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 Thurza, I think that R.'s database is probably the best we have. has always been more than willing to share. I wonder if NIH actually has a list to support their number? Most of us have always heard between 400-500 and now to hear 2,000 is a big jump. Perhaps, someone who has a contact at NIH could pose the question. I've always been convinced that " the Lord helps those who helps themselves " applies to everything. Gentner Fremont, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 Dolores, Do you think it would be appropriate if you asked them if you could enter their data for them? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 : Yes, both Dr. Zhai and Dr. Floeter @ NIH said there are probably 2,000 PLSers in the US. I asked for clarification, and they repeated the number. This is another example of why we need research and statistics collected in a form to be queried, shared by neurologists both clinical and research. Couldn't privacy be respected by use of patient numbers? We need a central data base! How else will we ever know how many of us there are and what is our clinical presentation and what is the progress of our disease? If we could find all of us, maybe we would already have collected 400 blood samples for the NW study! and maybe. . . . . . Thurza Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 I've always wondered about the number myself. In a small state as CT, we have quite a few that I know of because they have joined our support group, the CT Connection. My PT says she knows of two others with PLS, my neuro has one other besides me (and she really specializes in MS), C.'s neuro told that he has a number of PLSers, etc. The confidentiality issue really hinders our progress, doesn't it? I'm not sure what we can do about it except to keep spreading the word at every opportunity. Reconsideration of being open to peoples' questions, " what's wrong with you? " , is certainly in order. Dolores Re: # of PLSers > Thurza, > > I think that R.'s database is probably the best we have. has > always been more than willing to share. I wonder if NIH actually has > a list to support their number? Most of us have always heard between > 400-500 and now to hear 2,000 is a big jump. Perhaps, someone who > has a contact at NIH could pose the question. I've always been > convinced that " the Lord helps those who helps themselves " applies > to everything. > > Gentner > Fremont, CA > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 Re: Central Data Base, go to the Following; http://www.geocities.com/freyerse/plsdb.html I have also attached a picture of where they live. We have many more names and email addresses but we do not know where they live, we have to inspire more PLSers to fill in the "guestbook/data base form" on our PLS Web Site at: Primary Lateral Sclerosis Web Site http://www.geocities.com/freyerse/index.html Reyerse thurzacampbell wrote: : Yes, both Dr. Zhai and Dr. Floeter @ NIH said there are probably 2,000 PLSers in the US. I asked for clarification, and they repeated the number. This is another example of why we need research and statistics collected in a form to be queried, shared by neurologists both clinical and research. Couldn't privacy be respected by use of patient numbers? We need a central data base! How else will we ever know how many of us there are and what is our clinical presentation and what is the progress of our disease? If we could find all of us, maybe we would already have collected 400 blood samples for the NW study! and maybe. . . . . . Thurza Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 I know for certain that we have at least 9 in Connecticut. At least 2 of them do not have computers, so would not be in the "guest book/data" listing. Dolores Re: # of PLSers Re: Central Data Base, go to the Following; http://www.geocities.com/freyerse/plsdb.html I have also attached a picture of where they live. We have many more names and email addresses but we do not know where they live, we have to inspire more PLSers to fill in the "guestbook/data base form" on our PLS Web Site at: Primary Lateral Sclerosis Web Site http://www.geocities.com/freyerse/index.html Reyerse thurzacampbell wrote: : Yes, both Dr. Zhai and Dr. Floeter @ NIH said there are probably 2,000 PLSers in the US. I asked for clarification, and they repeated the number. This is another example of why we need research and statistics collected in a form to be queried, shared by neurologists both clinical and research. Couldn't privacy be respected by use of patient numbers? We need a central data base! How else will we ever know how many of us there are and what is our clinical presentation and what is the progress of our disease? If we could find all of us, maybe we would already have collected 400 blood samples for the NW study! and maybe. . . . . . Thurza Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 I did for the ones I know about. The ones who are known to the MDs and PTs are the confidential ones. Dolores Re: # of PLSers > Dolores, > > Do you think it would be appropriate if you asked them if you > could enter their data for them? > > > > > > > Quote Link to comment Share on other sites More sharing options...
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