I'd like to know who decided on these questions, what you intend to do with the answers, how you intend to archive them, and the identities of the people that you find attached to them. I know you have the best of intentions, but if we are going to do a survey on these boards it will have to be done WITH THE COOPERATION OF OCF, AND WITH PROPER CONTROLS IN PLACE. Please contact me about how we can do this so that it has scientific merit, controls and patient privacy protections. Without doing this correctly in a manner that does not introduce bias into it, or in which we know what the bias is, the survey results are not useful to anyone.

Linda has a worthwhile idea here. But please, let's set this up correctly so any results are of true use to a researcher. Please hold off answering until she and I have an opportunity to set this up properly.

These boards are not for the arbitrary collection of information. Not by individuals, researchers, or private companies. We guard them carefully. We have the ability to contact many families patients and survivors. We can do something worthwhile, but no one is allowed to just post surveys without OCF's permission, and controls on how that information will be used. Obviously I am sure that Linda had no malice or ill intent, but rules here are the rules.