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 -- http://www.huffingtonpost.com/stephen-finger/national-als-registry_b_5620631.html
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?