Your answers will help give a better understanding of how Fragile X syndrome affects families and children
- What job opportunities are available to young adults with Fragile X syndrome?
- When do parents tell a daughter that she is a carrier of Fragile X syndrome?
- How knowledgeable is your child’s doctor about Fragile X syndrome?
- How do you plan for the long term care of adult children with Fragile X syndrome?
With your help, Our Fragile X World’s new survey, The National Fragile X Survey – Phase II, will provide answers to these important questions and many more!
The National Fragile X Foundation is partnering with RTI International{{1}} and the University of North Carolina at Chapel Hill on this important study. The survey asks questions about many different topics important to families and individuals with Fragile X syndrome such as: autism, social skills, leisure activities, functional and daily living skills, adulthood and guardianship, health care and treatment, female reproductive health, and family adaptation and communication. The purpose is to gain a better understanding of how Fragile X syndrome affects both families and children.
Many of you have already enrolled in Our Fragile X World and have recently received a letter in the mail announcing the new survey. RTI International is working with the National Fragile X Foundation to reach out to other families who might be interested in participating in the survey but who do not want to enroll in the registry.
If you are interested in learning more about the National Fragile X Survey – Phase II or about Our Fragile X World, please click on the link below or call the project team toll-free at 1-866-214-2044:
In appreciation for your support, for every 50 people who complete the survey RTI International will donate $500 to the National Fragile X Foundation to assist their research, education, awareness and support activities.
Your participation in this survey is entirely voluntary and all your responses will be kept confidential. No personally identifiable information will be associated with your responses in any reports of this data{{2}}. Should you have any questions or comments, please feel free to contact us at fragilex@rti.org or 1-866-214-2044.
[[1]]RTI International is one of the world’s leading research institutes, dedicated to improving the human condition by turning knowledge into practice. Our staff of more than 2,800 provides research and technical expertise to governments and businesses in more than 40 countries in the areas of health and pharmaceuticals, education and training, surveys and statistics, advanced technology, international development, economic and social policy, energy and the environment, and laboratory and chemistry services.[[1]]
[[2]]The RTI International institutional review board (IRB) number for this study is 11774.[[2]]