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Recently there have been several requests for information for surveys.
I, like many others on the list want more information on Celiac Disease
to be available for legitimate studies and also to help inform the
medical profession, public and especially suffering people not yet diagnosed.

My concern is that when we are asked to complete a survey and give
personal information,  I would like to know:

What the survey is for?
Who is going to use the information and for what purpose?
Who will benefit from the information gained?
Will we be able to get a summary of the information processed?

Until some of these questions are answered in a short summary before the
survey, introducing the group requesting the survey and answering some of
these questions, I think I will refrain from completing the forms.  A name and
address of the group or individual would be appreciated.  If anyone
else out there have any feelings or comments about this, I would like
to hear them.  Carol in NJ