Below you will find a the URL of a "survey" which asks for personal information like name and address, as well as whether you have hired a lawyer and what professionals have been most helpful to you:
The goal is to cut down costs for research projects by having a database of people diagnosed with these conditions. If enough people register it would mean there will be less money spent on advertising to find people interested in doing research studies.
Your informatio is not passed on to anyone else, except as an anonymous group statistic. The invitations to participate in a study are passed on to us and then we decide if we would like to contact them and participate or not. We also decide what information we give them, the original information is not disclosed and is stored offline after being gathered securely.
I hope at least some of you will consider this a worthy use of your time and effort.