A registry (to put this simply) is a collection of information; a survey is an anaysis of information. I guess you could use them interchangably but I think they should be kept separated. You can always "survey" the names collected from the registry. (Confused yet? lol)

I say it "failed," because nobody seems to be acknowledging it other than the Ali Center. Here we have legislation to set up another one partnering with MS, and we learn that NPF is doing one, also.

Here's a link to the registry at the Ali Movement Disorder Clinic and an explanation of what they are doing with the information.
http://www.maprc.com/cm/content/registry.asp

I am not sure when it started, but it's been open registration season for at least a couple of years. When you sign in to the registry then iti becomes a part of a database.

The purpose of the Registry is to facilitate the development of new therapies and healthcare services to improve the quality of life for people with PD. It will also accelerate the process of informing participants of more effective treatments.


Here's what you are consenting to when you register:
(from their website)

Please read the following informative statements before you sign your consent:

• By being enrolled in the Registry, you agree to be notified of research studies for which you may be eligible, but you are not obligated to enter any study.
• You will NOT be excluded from future studies if you decline to participate in a specific study or project.
• The data you provide may be used in scientific publications, in summary form only as aggregated data with all personal information identifiers removed.
• Your name will not be released to any individuals outside of the Registry Management Team without your written consent, nor will it be sold for advertising or fund raising.
• Participation in the Registry is completely voluntary and is of no cost to you.
• You will continue receiving additional questionnaires every six months for purposes of updating the Registry and gathering new information.
• You may receive the Southwest Parkinson News report free of charge if you wish (Unfortunately, we can only mail within the United States).

That's a LOT to commit to - I would venture to say that they lose some people due to this.

Peg