Tuesday, December 20, 2005

Some folks are setting up a site for people with ALS to track their symptoms, treatments, and metrics. They let me beta test it. It's going to be a for-profit company, but I'm guessing that member access will be free. I assume (hope!) that they will keep patient information confidential, and make money by selling ads to pharmaceutical companies, investment planning firms, for books about crafting wills, and other trades associated with the grim reaper. The site not fully fleshed out yet. I reprint my assessment below.

Here it is so far...

"Orthopnea" , "Dyspnea" -- also provide a layman's definition for these.

You should include a rating for emotional lability (inappropriate laughing or crying). Oh, now I guess that's what you mean by "Emotional exaggeration." I had no idea what that meant. An important thing for y'all to realize is that the crazy laughing and crying does not involve emotion, or does not have to, certainly not to the degree 'displayed.' I can feel perfectly stable and would, if healthy, appear calm, but despite my seeing nothing funny, I can laugh like a madman. It's neurological not emotional. So I think you should label this "Lability (uncontrollable laughing/crying)."

Add a unit such as "caplet" or "pill" to the drop-down list containing "mg," "g," etc. Sometimes one does not know the dosage in a caplet such as Citrucel. You can discourage people from being lazy in the use of this by prompting them to confirm that they really do not know the dosage -- makes it more work

Add units such as "TBS" and "tsp" for liquids to the drop-down list containing "mg," "g," etc. (Mineral oil being the example).

Add an intermittence feature to the dosing, to allow, for example, being on creatine three weeks and then off for one week in a continuous cycle.

I would hope that users who are not registered could nonetheless look at all the data and charts, groups and discussions (perhaps with names removed?). This would enable people who were pre-diagnosed, or caregivers, researchers, students or the media to view information and learn about how to struggle against ALS. It would also allow me to post a link to my charts in my blog.

From a technical standpoint, this site is well-crafted, stable and appealing. The session management is good. However, the content itself is limited in scope and should be expanded per our previous discussions. An added bonus would be statistical analysis tools for large data sets (e.g. metrics).

Well done, I hope people find it useful.
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