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Mosaic Down Syndrome (mDs) Survey

The aim of this study is to survey parents or caregivers who have children with mDs. The survey will collect information about how, why and when these children were diagnosed, their past medical history and parent's or caregiver's experience of parenting a child with mDs. This research project hopefully will help to further educate parents or caregivers of children with Mosaic Down syndrome (mDs) and professionals who may come in contact with these individuals throughout their career.

Participation in this research study is voluntary and participation may be discontinued at any time without penalty and all data will be discarded. The results of this survey are confidential and anonymous. Minimal risk is anticipated for participating in this research study. Any returned survey is an indication of consent to use the data that is provided. The collected surveys will be kept in a locked file cabinet in the office of Dr. Belsterling located at room # 294 Morgan Hall on the campus of California University of Pennsylvania.

The California University of Pennsylvania Institutional Review Board has approved this research study. This approval is effective 03/17/2010 and expires 03/17/2011.

Contact information of the researcher and the faculty advisor is provided below and can be contacted at any time with comments, questions or concerns.

Thank you in advance for your participation in this mDs research survey.

Researcher contact information : Faculty advisor contact information:

Name: Elizabeth Amelia Straub Name: Dr. Ralph Belsterling

Phone number: 412-372-6260 Phone number: 724-938-4385

Email Address: Str6381@calu.edu

Email Address:belsterling@calu.edu

http://www.surveymonkey.com/s.aspx?sm=ChzIAtixmFgMLcqav5HzMQ_3d_3d