There have been several SD surveys taken, by individuals and organizations. Unless you know these people, you never see or hear about the results. Wouldn't it be nice to have a thorough compilation of info, by SDers, FOR SDers?

There doesn't have to be any names or addresses...no personal info. Just statistics. As an example, it could say something like, out of the current response of, say, 150 SDers (and the number changes, with each new entry):

120 have AD, 20 have AB, and 10 are mixed

97 have been medically diagnosed

52 have tried Botox, and 34 are happy with the results

66 have Acid Reflux

12 have other forms of Dystonia

49 have tried chiropractic, and 30 are happy with the results

56 have tried Neurontin, and 15 are happy with the results

The database may even list alternative forms of treatment, that have helped (or not helped). Plus, it can mention how the SD got started, etc.

Anyone else think this is a good idea? If so, what would you add to the Database?

Also the person's approximate age when SD started. And the amount of time it took to be diagnosed.

More specifically and for example, if the database is populated by people who are aware of it via this BB and who choose to respond, one would have no logical basis for assuming that because x% of the respondents have good results from Botox that x% of the people suffering from SD have good results from Botox.

This post should not be construed to imply that a database is not a good idea, only that its informational value is limited in the above described way.

(mathematicians can be such a pain...........)

Have to go along with what the two Linda's said. One said it would cost money and the other said "caution." As in, if it can't be done right, it shouldn't be done. (*to Linda Spain: software quality consultants are as annoying as mathematicians, and are equally committed to collecting valid/relevant data. ;-) LOL. Good point*).

I proposed something very similar (with an Access DB available online through this BB) almost three years ago and four of us who had applicable work experience discussed it several times but with doing Requirements Definition and trying to figure out how to collect accurate data and implement the database and then thinking of how much work it would take to ensure its accuracy and keep it current, we gave up. It's a **major** project, believe me. For us volunteers at the time, it was untenable. If someone wants to do it, best of luck.

While it's a great idea, the reason it's not been done to this point is due to the difficulty and inherent problems in developing something of this nature. Somebody would need to step up and do it as Linda Spain suggests. Correctly. As a lifelong software quality/project manager, I'd guarantee it's not going to be easy or cheap. Also, keep in mind that if it is a feature of this BB, it would have to be approved by the NSDA (the non-profit which pays for this BB). One of the problems is that, as a feature of this BB, people might actually access a db and make treatment decisions based on it. That would be a problem, if it's not accurate or current. We all know how complex SD is.

In addition, one of the benefits of the BB is *the personal touch* (being able to communicate with other patients) rather than just stats.

So, as positive a concept that a db is, there are numerous ramifications. As mathematicians/statisticians/analysts on this BB know (and there are plenty of us, if only by personality), you get what you measure and if you measure inaccurately, you're going to get a negative outcome. Bad statistics become bad lies.

In the meantime, the NSDA does have available survey/questionnaire results from a comprehensive survey done in Australia and New Zealand in the late 90's. It is available (hopefully it still is) by contacting the NSDA (link below). It was distributed at the Michigan Symposium in March, 2001 and is well-done and good-reading. In addition, there used to be a survey done by Jean Newcomer, as an NSDA volunteer, when many of us joined the NSDA years ago, reflecting alot of the same information proposed in this thread. Not sure if Jean is still doing the survey but she was ~ up until recently. Any NSDA member should be able to access that information.

Also, Micki Nellis (SD patient) was doing a survey/questionnaire with similar stats/data possibly a year or so ago? Not sure on dates. Micki continues to post here periodically but also has her own website and message-board and may be able to share the type of information she collected online there. I think her website is " http://www.buffalo-creek-press.com." A Google search should find it.

It's great to see the energy on behalf of such a resource but we went round-and-round on the same thing in the past and it was a huge project and might create more problems than it solved. Good luck to anyone who wants to take it on and do it right.