Carriers of the Fragile X Premutation

We want to hear from Black and Latina mothers who have a child with fragile X!

This study focuses on understanding the experiences of Black and Latina mothers of children with fragile X. In particular, we would like to know how caring for a child with fragile X syndrome has affected future life planning as well as what you would like researchers to focus on. This information will help us understand research priorities of Black and Latina mothers and how we can provide culturally appropriate support.

Who can participate?

  • Biological mothers of children with fragile X syndrome
  • Identify as Black or Latina

What does the study involve?

For this study, you will be interviewed either over Zoom, the phone, or What’sApp. We will ask you a series of questions about your plans for the future, how you have been taking care of your child with fragile X, and your experiences with healthcare for you and your child. The interview will be recorded and transcribed for analysis.

Is travel required?

Travel is not required. The interview will be done over Zoom, the phone, or WhatsApp. An internet connection will be required in order to sign a consent form and fill out a short survey about yourself.

What is the compensation?

You will receive $20 for completing the study.

How can I get more information?

Interested in learning more? You may also reach us at, call us at (803) 576-7359, or message us on WhatsApp at (803) 904-8184.

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