TABLE 1

Overview of the FORWARD Study Design

EligibilityRegistryLongitudinal Study
AgeAll ages0–24 y for compensated enrollment; however, all ages can be enrolled
SexMales and femalesMales and females
Race/ethnicityAll race/ethnic groupsAll race/ethnic groups
FMR1 mutation statusNoncarriers, premutation, and full mutation carriersFull mutation carriers, including mosaics
Data collection source2-page registry formClinician report form
Self or guardian report formParent report form
Standardized self- and parent-report behavioral assessments (ABC-C, SRS-2, SCQ)
Data domainsDemographicsClinician report form
FMR1 mutation/diagnostic status Physical exam (eg, height, weight, and head circumference)
Primary spoken language Medical history (eg, seizures, vision problems, musculoskeletal problems, chronic medical problems)
Availability of participant for research projects Language, speech, and communication
 Cognition
 Behavior
 Psychopharmacology for behaviors
 Hyperarousal or sensory issues
FMR1 mutation laboratory diagnostics
Parent report form
 Developmental milestones
 Sleep characteristics
 Education and transition history and intervention
 Family support
 Social participation and residential settings
 Heath monitoring practices
 Socioeconomic status
Data collection frequencyOnceClinician and parent report forms: annually
ABC-C: annually
SRS-2 and SCQ: once