Frequently Asked Questions

This list answers common questions that people have about Our Fragile X World. If we have not answered your question, please feel free to contact us. We will get you the answers you need as quickly as we can.

About Our Fragile X World

Who hosts the Our Fragile X World program?
Our program is hosted by RTI International, an independent, nonprofit research institute. The team that leads the program at RTI is a group of experts who have worked with people with fragile X and their families for many years. Learn more about our team.

What are your studies about?
Our studies are about topics such as

  • Adults with fragile X
  • Success of new treatments
  • Challenging behaviors
  • Health care coverage
  • Policy needs to better support families

Learn more about our work.

How do you use the results of your studies?
We use the results of our studies to help researchers understand the needs of families who have a child with fragile X syndrome. The results also provide valuable information that families, policy makers, advocates, and professionals can use to make the case for better programs and services.

 

Signing Up for Research Studies

What is a research registry?
A research registry is a list of people who have a specific condition or disease. Our list has contact information for people with fragile X and their families. Only people who have agreed to be on this list are in the registry.

How can I take part in one of your studies?
To be able to take part in one of our studies, please sign up for our research registry. We contact people on our registry list from time to time to invite them to take part in studies on fragile X. When we contact a family about a survey, they can decide if they would like to take part or not.

Why should I sign up?
We need more information to understand fragile X better, find treatments that work, and help families. Your participation will help make these studies a success. We will use what we learn from the surveys to inform science, support policy, and improve health care and support services. Learn more about being in one of our research studies.

If I sign up for your contact list, will you keep my information private?
We will only use your information to let you know about how and when you can take part in a study. We pledge that we will keep your information private and safe. We will never share your information with outside groups. Read more in our privacy policy.

 

Taking Part in Research Studies

Who can take part in your studies?
You may be able to be in a study if you or a family member has fragile X syndrome. This includes those with the premutation or full mutation.

You may be eligible if

  • you or your spouse has fragile X syndrome, or
  • you are a parent of a child with fragile X syndrome under 18 years of age (this includes biological, step-, adoptive, and foster parents), or
  • you are a legal guardian of an adult family member with fragile X (such as a sibling).

What can I do to take part?
If you sign up for our registry list, we will ask you to take surveys from time to time. We expect to ask you to do no more than one or two surveys per year. Each survey will be web or phone based, so you can complete it quickly and easily.

It is completely up to you to do a survey or not. Each time we invite you to take a survey, you may accept or refuse. You may choose not to do a survey and still stay in the program. You may also leave the program at any time.

Do you share the results of your research with participants?
Yes, we post the results of our studies on our website. You can view reports and publications from our past projects.

Who approves your studies?
The Institutional Review Board (IRB), part of RTI's Office of Research Protection, has approved our research program and registry. Our IRB also looks over and approves each survey that we invite people to do.

 

Finding More Resources

Are there other research programs for people with fragile X?
There are a number of research programs for people with fragile X and their families. Our Fragile X World is only one of those programs. Two other fragile X research programs keep a list, or registry, of people who agree to be contacted about studies. These programs are not linked with RTI or with Our Fragile X World. To find out more about these programs, please visit their websites:

What if I have a question about this program?
Please call us at 1-866-214-2044 or e-mail us at fragilex@rti.org.

What if I have technical issues with this website?
Please call us at 1-866-214-2044 or e-mail us at fragilex@rti.org.

What if I have a question about my rights as a study participant?
Please contact our Office of Research Protection at 1-866-214-2043 or by e-mail at ORPE@rti.org.

What if I have a medical question about fragile X syndrome or want to find a parent support group?
Our Fragile X World is funded as a research project; therefore, we are not able to provide advice or treatment information about fragile X syndrome. For questions about fragile X syndrome or to find a parent support group in your state, please contact the National Fragile X Foundation at 1-800-688-8765 or by e-mail at natlfx@fragilex.org, or FRAXA Research Foundation at 1-978-462-1866 or by e-mail at info@fraxa.org.