Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Thursday, May 7, 2015

Before We Ask For Another $10,000,000.00 For The ALS Registry - Question 1

Next week ALS advocates will be sent to Capitol Hill to ask for another $10 million for another very generous ALS Registry budget.

We have questions.

A PALS described a problem with the first Registry report issued last July --

Q1:  Have any of the local studies that were funded as part of the Registry project shed any light on this significant concern on how large the big "unknown" patient population is?  Are we able to extrapolate how many PALS are likely not found via the Registry's database mining and the online enrollment portal?

1 comment:

  1. Received an answer and am grateful for that.

    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.

    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