Summary of Changes

Attachment 3

Revisions to Data Collection

Revision or New	Change	Rationale
New	Attachment 6A - existing physical activity survey with a new set of physical activity questions	The existing set of questions is not adequately capturing the information needed to expand the knowledge of ALS risk factors. The new survey questions will better capture this information as well as allow ALS data to be more comparable with data collected elsewhere
New	Attachment 5 - Add abbreviated race question to registration	For those individuals who register and are not found in administrative data there is no race data unless the individual completes survey module 1. This would give us a little information on race for these individuals and the categories are consistent with what is available in the administrative data because about 40% of participants do not complete Survey 1.
New	Attachment 5 – Add question about length of time until password must be reset	We are aware that for persons with ALS (PALS) the requirement to change passwords every 6 months is an additional burden that may prevent them from providing valuable survey information. We are requesting an additional question to allow PALS to select a password expiration that is 6 months, 1 year or indefinite; these options have been approved by The Office of the Chief Information Security Officer at CDC.