tag:blogger.com,1999:blog-62716487695149713.post6066133932640353553..comments2023-10-09T02:33:17.014-04:00Comments on ALS ADVOCACY: Before We Ask For Another $10,000,000.00 For The ALS Registry - Question 1ALSadvocacyhttp://www.blogger.com/profile/15638650524805735994noreply@blogger.comBlogger1125tag:blogger.com,1999:blog-62716487695149713.post-47869703143492256692015-05-07T19:07:20.271-04:002015-05-07T19:07:20.271-04:00Received an answer and am grateful for that.
Q:Do...Received an answer and am grateful for that.<br /><br />Q:Do you have a feel for how many PALS you don't find via the national databases, and of those, what percentage are found by the web portal? Thanks. <br /><br />A: The majority of Registry PALS are found in the national databases using our pilot-tested algorithm described in the webinar. The percentage of PALS from the national databases is 80% and 20% from the web portal. Also, we are in the process of testing the completeness of our Registry through 1) cross-referencing the cases in the Registry with those found through the state/metro initiative which used active surveillance methods, and 2) using capture/recapture statistical techniques. -Dr. Kevin Horton <br />ALSadvocacyhttps://www.blogger.com/profile/15638650524805735994noreply@blogger.com