Thank you for your interest in participating in Project AngelData! Please take a couple of minutes to read the following; This welcome covers the purpose of the survey, the privacy statement, as well as the intended use of the data gathered.
Privacy StatementThis survey asks for a lot of personal and identifiable information. We do this in order to best map out the needs and challenges of the average Angel family. You do not have to provide your real name for this survey. In order for the survey to be as accurate as possible, though, we do ask that you fill it out completely and honestly.
We will also never give out your information without your express, written (emailed) permission. When aggregate survey results are available for viewing, they will be averages and totals of all surveys submitted, but with no identifiable information available to the public.
There is a check box at the very end of the survey where if you select it, you will be emailed about updates to the survey, as well as the availability of aggregate results. (I will also email this information to the Angelman Listserv). If you don't check off the button, you'll never be contacted, period. (Of course, if you also don't fill out your email address, you'll never be contacted, either :)
At this point in time, only the author of this survey, me, Marc Bissonnette, has access to all collected survey data. If you have any further questions, concerns or comments about the survey, please feel free to contact me anytime.
I will make the raw survey data available to anyone who asks for it, minus the following information:
Should there be a need for someone to have this information, I will email each and every person who has indicated that they are willing to be contacted and ask their individual permission to release that information, to whom it will be released and for what reason. If you say no, indicate you do not wish to be contacted, do not respond, or do not fill in an email address, then your personally identifying information will not be released to the entity requesting the raw survey data.
Purpose of This SurveyI created this survey, along with the help of some very smart, very experienced and very dedicated parents of the Angelman Listserv (see the "thanks" part of the survey at the bottom) in order to get a better idea of what Angelman families truly face out there in their day-to-day lives.
I want the data to be available to anyone who needs it as backup for their research, requests for funding, lobbying for better services or media awareness. I also want the survey data to be available for parents to use for all the people who think that raising an angel is "easy", or is "no big deal".
I would like to thank again the amazing people from the Angelman Listserv who made this survey possible. I am still relatively new to the Angelman Syndrome family (just over three and a half years), and without the Angel list's wisdom and guidance, I'd be lost even with my own son, much less this survey.