ALS Registry meeting...

[TedH5]

Please help. Late next month, A friend will be serving as a panelist with the National ALS Registry team with the ATSDR / CDC for the 3rd time, as a PALS representative. He has been asked to give about a 15 minute presentation on PALS’ perception of the Registry and especially to discuss ways to reach out to all PALS.

He has prepared a simple 10-question survey aimed at PALS' awareness of the Registry, on his own, located at the following weblink:

PALS Feedback on National ALS Registry Awareness Survey

We'd like to get as many responses as possible from PALS (or CALS on their behalf). The target respondents are American PALS (or CALS). Please only one response per PALS (no need for PALS and CALS pairs to both respond. Also, excluded are CALS of PALS who died before October 2010, since they could not register.

Responses are 100% anonymous. Please respond whether or not you have registered and whether or not you are satisfied with the Registry (to prevent selection bias).

Thanks in advance!

 

[brooksea]

Ted, can cALS that lost their pALS that were registered with the National Registry answer the survey?

 

[Will]

The password situation is untenable for many. Too many rules on how to make a password; too frequent necessary changes to the password. This is not Fort Knox. You should be able to make almost any password that is simple to remember and maintain. It is hard for may PALS to type at all, let alone go thru the hoops of logging into the Nat Registry site!

 

[glupavomomiche]

I'm also having password issues with the registry. I tried to get it by email since I missed changing it every three months, and you can't get that info through the email... you have to call. It's pretty ridiculous. If they want people to do it, it's going to have to get easier to use.

 

[Okie2]

I too have had trouble staying up to date with the password issue. It does seem a bit much but I can also see the need for a control to access for the registry.

 

[TedH5]

1) Unfortunately family or friends of PALS who have passed away can not enter data for them.

2) I personally have talked with them about the situation with passwords etc. Unfortunately this is the CDC rules. They have successfully changed the rules for changing your password from every 60 days to 6 months. As far as the username and password length and characters they are aware of the concern and are working on it.

I will make sure this info is brought to their attention again.