If you haven’t signed up for the Fragile X Survey here is all the who what when where and why’s. I just enrolled our family with 4 children and it took about 30 minutes
What Is The National Fragile X Survey?
The survey will provide researchers with important information about how fragile X syndrome affects families, including the medical and nutritional needs of children with fragile X, the use of educational services and supports, and the cost of raising a child with fragile X. We are interested in having all kinds of families participate in the survey. Any family with a child who has fragile X, whether they are a carrier or have the full mutation, is eligible.
Why Is this Study Important?
This study is the first national survey of families who have a child with fragile X. The results of the survey will be shared with national fragile X organizations, researchers, and legislators to help change policy and improve practice.
Why Should I Participate?
Although many studies have been conducted with families of children with fragile X, this study will be the first to survey a large number of families. Your participation will provide researchers with a national picture of the needs of families with a child who has fragile X.
At least 2,500 families are needed for the survey, so your participation is very important!
What Does My Participation Involve?
Enrollment in the survey will start in August and continue through December 2007. During enrollment, families will be asked to provide information about each child in their family, regardless of whether they live in the household. For each child, we will ask their age, gender, whether they have been diagnosed with fragile X, and some general health information, such as have they ever had a seizure. We will ask for similar information about each adult living in the household.
Enrollment will take about 20 minutes and can be completed on the Internet at https://fragilex.rti.org or by calling toll-free 1-866-860-5229 to speak with an interviewer.
The national survey will begin in January 2008 and will include more in-depth questions about your family. It will take about 35 to 40 minutes and can be completed online or by telephone. We will send information about the national survey to all families enrolled in the study.
Will the Information I Provide Be Kept Confidential?
All information collected will be kept confidential. Your answers will be combined with the information we get from other families. Individual answers and names will not be published in any study report or disclosed to any individual or organization.
Where Can I Learn More about My Rights as a Study Participant?
Participation in the study is voluntary and you have the right to stop your participation at any time. In addition, you may choose to skip any questions that you do not want to answer. If you have questions about your rights as a survey participant, please contact the RTI Office of Research Protection by calling toll-free 1-866-214-2043.
Who Is Doing the Study?
Dr. Don Bailey, an expert in fragile X research at RTI International, is directing the study. RTI is collaborating with several national fragile X organizations, researchers, and the Centers for Disease Control and Prevention. Our research partners are mailing letters and this study brochure on our behalf to families on their distribution lists. You were contacted because you have an existing relationship with one of our research partners.
• The National Fragile X Foundation
• FRAXA Research Foundation
• Conquer Fragile X Foundation
• Elwyn Institute
• Emory University School of Medicine
• Greenwood Genetic Center
• Kennedy Krieger Institute
• New York State Institute for Basic Research in Developmental Disabilities
• Rush University Medical Center
• University of California , Davis , M.I.N.D. Institute
• University of North Carolina at Chapel Hill, FPG Child Development Institute
• University of Wisconsin , Waisman Center
• Other research groups or fragile X clinics
Where Can I Learn More about The National Fragile X Survey?
For more information or to enroll, please visit our Web site at https://fragilex.rti.org.
Who Do I Contact If I Have Questions?
Please contact Melissa Raspa, the project manager, if you have any questions about the study.
Melissa Raspa, Ph.D.
3040 Cornwallis Road
Research Triangle Park, NC 27709
This study is funded by the Centers for Disease Control and Prevention through a grant to RTI International. RTI International is a trade name of Research Triangle Institute.