What to Expect During Your Visits
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.