KS&A has stopped collecting responses in order to analyze the data and create the educational booklet. We hope to share the results with you as they become available.

KS&A has a longstanding tradition of supporting qualified researchers in their efforts to recruit participants for their studies. Your willingness to contribute to research is crucial to helping KS&A fulfill its mission to help individuals with one or more extra X and/or Y chromosomes and their families lead fuller and more productive lives.

Recently the research committee reviewed and approved the study below. If you have questions or concerns about any of these studies, you may send them to info@genetic.org ***

We invite you to participate in a research study that is being done in conjunction with KS&A by Kathleen Erskine, a graduate student in the Joan H. Marks Graduate Program in Human Genetics at Sarah Lawrence College. The purpose of this study to identify the important aspects of 47, XXX/ 3X/ Triple X/ Trisomy X to discuss with girls when they first learn about their Trisomy X diagnosis. The end result of this study will be an educational booklet for parents to give their daughters when they first tell her about Trisomy X.

This survey is open to: - parents who have told their daughters about their Trisomy X diagnosis - parents who have not yet told their daughters about Trisomy X - Women who have Trisomy X and are over the age of 18 - Young women who have Trisomy X and are between the ages of 14 and 17 (with parental permission)

The survey should take approximately 30-40 minutes to complete and will ask questions about specific aspects of Trisomy X that may be included in the first discussion about Trisomy X as well as some questions about your experiences or concerns regarding this first Trisomy X discussion. The survey will be done online and is anonymous. We will not ask for your name or other personal identifiers and will not be able to link you to your responses.

Your participation is entirely voluntary and you will not be paid for completing the survey. If you are a parent who has told your daughter about her Trisomy X diagnosis, please click here to learn more about the survey and to participate: www.surveymonkey.com/s/MVLSF5B

If you are a parent who has not yet told your daughter about Trisomy X, please click here to learn more about the survey and to participate: www.surveymonkey.com/s/MVBZ9DL

If you yourself have Trisomy X and are over 18 years of age, please click here to learn more about the survey and to participate: www.surveymonkey.com/s/M7XVHZF

In order to assure that teens aged 14-17 have parental consent to complete the survey, access to their survey requires a password. If you are a parent and have a daughter with Trisomy X who is between 14-17 years old and who may want to participate in the survey, please contact Kathleen Erskine at kerskine@gm.slc.edu or 914-361-9093 for the web address and password for the survey. After this communication, any voicemails or email communication will be deleted and will not be tied to your daughter’s responses. Thank you for your time and interest! If you have any questions, please contact Kathleen Erskine at kerskine@gm.slc.edu or 914-361-9093.

Jim Moore Executive Director KS&A has move to Colorado. New Address and Phone Info P.O. Box 461047 Aurora, CO 80046-1047 jmoore@genetic.org www.genetic.org 888-999-9428 Denver/International: 303-400-9040

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