DS/AD Questionnaire |
Childhood Education and Early-Onset Alzheimer's Disease in Down Syndrome
You are being invited to participate in a research study. The purpose of the study is to investigate potential links between childhood educational environment and the risk of developing Alzheimer’s dementia in individuals with Down Syndrome. The study is voluntary and there is no penalty if you do not participate. In order to participate you must be 18 years of age or older, and you must be the primary caregiver or responsible party of an individual with Down Syndrome who is 18 years of age or older. If you agree to participate, you will complete a questionnaire about the past educational environment of your family member or the individual for whom you care, as well as his/her physical and mental status. The survey questions are relatively comprehensive, including many different aspects of the subject's activity and lifestyle; however, research has suggested relationships between these different topics and a susceptibility to Alzheimer's Disease which are important to include in this study. The questionnaire will take approximately 30 to 45 minutes to complete. The survey responses will be gathered by the investigators anonymously through SurveyMonkey, an online survey service company, and the risk of loss of confidentiality is minimal. The investigators will not be able to identify you or your family member in any way. If you have any questions about this research study, please contact Dr. Jason Kaufman (623-572-3717; jkaufman@midwestern.edu). If you have any questions regarding the rights of a research subject, please contact the Midwestern University Office of Research and Sponsored Programs (623-572-3728). This study has been approved by the Midwestern University Glendale Institutional Review Board.
Note: Please provide the responses that reflect the individual’s lifestyle prior to February 2020 and before any stay-at-home orders were placed into effect. Thank you.