Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Group, We are actively moving forward on building our SPF Patient Registry. I'm working on a sample letter and Form from SPF that we can send out to our neurologists to get their help in locating other people with PLS and getting them into our Patient Registry. I'll give them to Jackie, who is making a list of people who can help on this special project. If you can help, let Jackie know at Hoppywell@.... Supposedly, there are some 500 people with PLS in the U.S. but researchers (and we) think that's an underestimate. We only have a tiny portion of them in the Patient Registry right now. So we have a long way to go! We need to find others so that they know they aren't alone and get the information and support they need. Especially people without computers. I've forgotten the % of people without computers, but I think it's like 30%. They will never come across us without outreach efforts. With a good Patient Registry, we can also better target areas for outreach, Conferences and Connections. We can do patient surveys and get lots of valuable information for researchers as well as the community. We can help researchers find the subjects they need to do their research so that we can move research along. Reaching out to our neurologists and getting their help in finding others with PLS will help a lot! And, so will getting yourself in the Registry. If you've ever received any snail mail from SPF, then you are already in the Registry. But if you haven't, then you aren't. You can send that information to: community@.... Please note that you have PLS, as the SPF Patient Registry includes people with PLS and HSP. The Patient Registry is kept 100% private and confidential. Please keep in mind that this is a Registry for people who have PLS or HSP. It is not a Registry for people with ALS. Thanks, Kathi Geisler Spastic Paraplegia Foundation, Inc. www.sp-foundation.org " Hope is like a road in the country; there wasn’t ever a road, but when many people walk on it, the road comes into existence. " - Lin Yutang Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 I have PLS and I'm not in the registry. How do I get on?? Roy kathigeisler1@... wrote: Group, We are actively moving forward on building our SPF Patient Registry. I'm working on a sample letter and Form from SPF that we can send out to our neurologists to get their help in locating other people with PLS and getting them into our Patient Registry. I'll give them to Jackie, who is making a list of people who can help on this special project. If you can help, let Jackie know at Hoppywell@.... Supposedly, there are some 500 people with PLS in the U.S. but researchers (and we) think that's an underestimate. We only have a tiny portion of them in the Patient Registry right now. So we have a long way to go! We need to find others so that they know they aren't alone and get the information and support they need. Especially people without computers. I've forgotten the % of people without computers, but I think it's like 30%. They will never come across us without outreach efforts. With a good Patient Registry, we can also better target areas for outreach, Conferences and Connections. We can do patient surveys and get lots of valuable information for researchers as well as the community. We can help researchers find the subjects they need to do their research so that we can move research along. Reaching out to our neurologists and getting their help in finding others with PLS will help a lot! And, so will getting yourself in the Registry. If you've ever received any snail mail from SPF, then you are already in the Registry. But if you haven't, then you aren't. You can send that information to: community@.... Please note that you have PLS, as the SPF Patient Registry includes people with PLS and HSP. The Patient Registry is kept 100% private and confidential. Please keep in mind that this is a Registry for people who have PLS or HSP. It is not a Registry for people with ALS. Thanks, Kathi Geisler Spastic Paraplegia Foundation, Inc. www.sp-foundation.org " Hope is like a road in the country; there wasn’t ever a road, but when many people walk on it, the road comes into existence. " - Lin Yutang Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Hi Carolyn, You're right, with the HIPPA laws medical people can't give out ANY information. However, we can give our information to them. I made up an information sheet listing our websites, The Physician's Guide to PLS, and listed my information as a contact and took it to the UCSF ALS Research Center where I go. From the information that I provided them, they made up a packet for newly dx'd. PLS patients and they give my name to them. They can't give their names to me but they give my name to them...more than one way to try and reach people. By doing this, they have probably referred 6 or so new PLSers to me over the last couple of years. My neuro told me recently that they see about 12 PLSers now. Gentner sp-foundation Alone we can do so little. Together we can do so much. Helen Keller (1880-1968) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 ---Kathi, great idea. I don't know if it will work, because here in Washington the medical people can't give anything out about a patient, not even their name. I guess if they would take the time and ask the patient if they could give that information it would work. CarolynIn PLS-FRIENDS , kathigeisler1@a... wrote: > Group, > > We are actively moving forward on building our SPF Patient Registry. > > I'm working on a sample letter and Form from SPF that we can send out to our > neurologists to get their help in locating other people with PLS and getting > them into our Patient Registry. I'll give them to Jackie, who is making a list > of people who can help on this special project. If you can help, let Jackie > know at Hoppywell@a... > > Supposedly, there are some 500 people with PLS in the U.S. but researchers > (and we) think that's an underestimate. We only have a tiny portion of them in > the Patient Registry right now. So we have a long way to go! > > We need to find others so that they know they aren't alone and get the > information and support they need. Especially people without computers. I've > forgotten the % of people without computers, but I think it's like 30%. They will > never come across us without outreach efforts. > > With a good Patient Registry, we can also better target areas for outreach, > Conferences and Connections. We can do patient surveys and get lots of > valuable information for researchers as well as the community. We can help > researchers find the subjects they need to do their research so that we can move > research along. > > Reaching out to our neurologists and getting their help in finding others > with PLS will help a lot! And, so will getting yourself in the Registry. If > you've ever received any snail mail from SPF, then you are already in the > Registry. But if you haven't, then you aren't. You can send that information to: > community@s... Please note that you have PLS, as the SPF Patient > Registry includes people with PLS and HSP. The Patient Registry is kept > 100% private and confidential. > > Please keep in mind that this is a Registry for people who have PLS or HSP. > It is not a Registry for people with ALS. > > Thanks, > Kathi Geisler > Spastic Paraplegia Foundation, Inc. > www.sp-foundation.org > > " Hope is like a road in the country; there wasn’t ever a road, but when many > people walk on it, the road comes into existence. " > - Lin Yutang > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 ---, sounds like a great plan. Carolyn In PLS- FRIENDS , lkgentner@a... wrote: > Hi Carolyn, > > You're right, with the HIPPA laws medical people can't give out ANY > information. However, we can give our information to them. I made up an information > sheet listing our websites, The Physician's Guide to PLS, and listed my > information as a contact and took it to the UCSF ALS Research Center where I go. > From the information that I provided them, they made up a packet for newly > dx'd. PLS patients and they give my name to them. They can't give their names > to me but they give my name to them...more than one way to try and reach > people. By doing this, they have probably referred 6 or so new PLSers to me > over the last couple of years. My neuro told me recently that they see about 12 > PLSers now. > > Gentner > sp-foundation > > Alone we can do so little. Together we can do so much. > Helen Keller (1880-1968) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Kathy, my neuro said he had nine PLS'ers. Donna > Hi Carolyn, > > You're right, with the HIPPA laws medical people can't give out ANY > information. However, we can give our information to them. I made up an information > sheet listing our websites, The Physician's Guide to PLS, and listed my > information as a contact and took it to the UCSF ALS Research Center where I go. > From the information that I provided them, they made up a packet for newly > dx'd. PLS patients and they give my name to them. They can't give their names > to me but they give my name to them...more than one way to try and reach > people. By doing this, they have probably referred 6 or so new PLSers to me > over the last couple of years. My neuro told me recently that they see about 12 > PLSers now. > > Gentner > sp-foundation > > Alone we can do so little. Together we can do so much. > Helen Keller (1880-1968) > > > Quote Link to comment Share on other sites More sharing options...
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