New York City Education, Therapy and Techonology Survey
Dear Parents and Caregivers,
You are invited to participate in an educational survey by Rethink Education, Therapy & Technology.
Why is this survey being done?
We would like to gather information to better assess what programs, techniques, and settings are most effective for educating individuals with Rett Syndrome. In addition, we hope that the survey will be useful to identify areas of unmet need and focus the efforts of Rethink Education Therapy & Technology.
Who can take part in this survey?
You must be 18 years of age or older and must be a parent or primary caregiver for a person with Rett Syndrome.
While the survey was designed for parents/guardians of individuals with Rett Syndrome in New York City, we welcome the participation of anyone who is a parent, guardian, or primary caregiver for a person with Rett Syndrome.
What is involved in this survey?
This is one survey that takes approximately 20-30 minutes to complete.
We are not seeking to critique choices that individuals and families have made. There are no right, wrong, or best answers.
Please note that this survey requests some information that could be viewed as medical or personal. Your participation is voluntary; please feel free to answer only those questions with which you are comfortable.
Do I have to participate?
No, you do not have to take part in this survey if you do not want to. If you begin the survey, you can choose to skip any question that you do not want to answer. You can also stop taking the survey at any time. If you submit the survey and then change your mind, we will not be able to delete it since the surveys are all anonymous.
Who else will know that I am in the survey?
We do not ask for your name or contact information on this survey. If you provide us with your name by calling or writing to us, we will not link your name with your responses. This survey will not be part of any medical record. When we report our research results, it will be done with no identifiable information from individual participants.
What is the timing for the survey?
We request that you complete the survey by August 31, 2009.
How are the results going to be used?
Results from the survey will be made available to participants who provide their contact information and may also be made available to interested organizations, researchers, educators, therapists and other professionals. By completing the survey, you are agreeing to share the information gathered from your responses. You do not have to give your name or contact information.
How do I participate?
You can leave the survey and then resume taking it later by clicking on the original link to the survey (http://tinyurl.com/nx5g28). If you prefer to complete a paper version of the survey, please contact Mimi Morales at [718 513 0687] or firstname.lastname@example.org to receive the survey and a pre-addressed and stamped return envelope.
Most of the questions will be answered with one of the following choices:
Some questions request a specific written response.
Please note that the survey often refers to “your child” and “her.” This was done for convenience. We still want you to answer the survey if you are the guardian or primary caregiver as opposed to being a biological parent. Likewise, if you have a son diagnosed with Rett Syndrome, we would appreciate hearing from you as well.
Thank you for your interest and time!