Characterizing the Natural History of Fragile X Syndrome to Inform the Development of Intervention Outcome Measures

FXS specialty clinics who are part of the Fragile X Clinical and Research Consortium. Data collection will include assessments to characterize the cognitive, behavioral, and adaptive skills, and other indicators of functioning of individuals with FXS. Planned coordination of standardized in-person behavioral and functional assessments and follow-up telephone survey questionnaires with CDC’s Study to Explore Early Development (SEED) Follow-up Study (RFA-DD21-001) will facilitate comparison of health and functional outcomes for the FXS population with those for other related and frequently co-occurring conditions such as ASD and developmental delay. Applicants may propose recruiting study participants from an individual FORWARD clinic, or recruiting from a group of FORWARD clinics with which the principal investigator has documented data sharing and collaborative agreements.