tag:blogger.com,1999:blog-3500936220214961312.post5866430761518328543..comments2023-10-02T04:06:53.185-04:00Comments on Brass and Ivory: Life with MS and RA: Clinical Trials for Multiple SclerosisLisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-3500936220214961312.post-32159086805086228942008-12-05T02:18:00.000-05:002008-12-05T02:18:00.000-05:00Hi Lisa and ShaunaIn Australia, there is a nationw...Hi Lisa and Shauna<BR/><BR/>In Australia, there is a nationwide, ongoing survey that any Australians with MS can register to participate in. Surveys are sent out a couple of times a year (along with updates on results) and participants can withdraw at any time. <BR/><BR/>Here's a link with more information about the research and recommendations (ongoing) being conducted as a result of it:<BR/>http://www.msra.org.au/research/ms-life-study.php<BR/><BR/>Perhaps there is something similar where you are?<BR/><BR/>So far, I have completed surveys that looked at MSers quality of life and the economic impact as well as other more specific areas like access to air conditioning. Data compilation is then gradually being used to help with decision making by governments, health sector and in the community.<BR/><BR/>cheers muchlyChe koalahttps://www.blogger.com/profile/09224701833663123033noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-79180644419887463732008-12-03T21:06:00.000-05:002008-12-03T21:06:00.000-05:00Shauna,That's an excellent point regarding the hea...Shauna,<BR/><BR/>That's an excellent point regarding the health surveys. If they are considered, then yes I've participated in research. LOL why didn't I think of that?<BR/><BR/>I particularly liked the way this letter read. Very respectful, not too familiar, thorough information, straight forward. If more PR companies used this simply approach, I'd gladly pass their information on more often.<BR/><BR/>The number of people eligible to participate in medical trials would seem to get lower and lower as time goes on, if for no other reason than needing patients who haven't used DMDs previously.<BR/><BR/>But no matter what, ALL patients can participate in surveys and quality of life research. Thank you for that reminder!!!!Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-79214478886704744412008-12-03T20:49:00.000-05:002008-12-03T20:49:00.000-05:00Something as simple as a survey filled out for the...Something as simple as a survey filled out for the MS society can aid in research. You don't necessarily have to be a pin cushion like some of us.<BR/><BR/>The account executive you heard from is from the same company that interviewed me for the PR campaign for End MS. I was very impressed with the woman I communicated with. And I'm excited that PR companies are being employed to recruit patients for MS studies. <BR/><BR/>When I was recruited it was a matter of chance. As the length of time that DMDs are on the market increases, so too, does the information to be gleaned from their use. Studies will lead to better treatment protocols.<BR/><BR/>I encourage everyone with MS to at least register with their local MS Society and inquire into completing possible health surveys by health researchers.<BR/><BR/>S.Anonymoushttps://www.blogger.com/profile/08793047835261862513noreply@blogger.com