Initial Screening Visit

Before eligibility can be determined, a participant must attend a screening session (for approximately four–six hours) at a clinic. The screening session will take place approximately two–four weeks before the study begins.
Below is a checklist for what you’ll need to bring to your initial screening visit.

Primary Care Physician Contact

FXS Diagnosis History

Medical Release Form

Additional Assessments

Following enrollment, a few of the assessments that will take place during the clinical studies include:

Blood Draw

Participants will have their blood drawn during the in-person safety and efficacy visits as well as during home safety visits by visiting nurses.

Cognitive Testing

Participants will complete an IQ test at screening and a portion of the same test at later visits; participants will also complete cognitive assessments on an iPad®.

Caregiver Assessments

Caregivers will be asked to assess overall progress and provide their assessment of potential changes in participants’ activities of daily living, language, and emotions/behaviors (and academic skills for adolescents). Caregivers will also be asked to complete the Vineland-3 adaptive behavior scale, the Aberrant Behavior Checklist (ABC), and the Anxiety, Depression, and Mood Scale (ADAMS) assessment tools.

 
  • Learn about our adolescent study in Fragile X syndrome.

    EXPERIENCE-204
  • Learn about our adult study in Fragile X syndrome.

    EXPERIENCE-301
  • Participants in EXPERIENCE-204 or EXPERIENCE-301 will be eligible to enroll in EXPERIENCE-302, an up to two-year, open-label extension, after completing Week 13.

    EXPERIENCE-302