Parent and Infant Inter(X)Action Intervention (PIXI)

Launched by RTI INTERNATIONAL · Feb 7, 2019

Keywords

ClinConnect Summary

Researchers are testing a new early-support program called PIXI (Parent-Infant Inter(X)action Intervention) for infants who have a confirmed, rare neurogenetic disorder and developmental delays or intellectual disability. PIXI runs during the baby’s first year and combines: education about the diagnosed condition and early development, help finding and using services, activities to support parent–child interaction, coaching for parents, and support for the family’s well-being. This is a single-group study (no comparison group) to see if the program is feasible, acceptable to families, and potentially helpful for both the child and the family.

To participate, infants must be 15 months old or younger and have a diagnosed rare neurogenetic disorder (examples include Fragile X, Angelman, Prader-Willi, Dup15q, Phelan-McDermid, Rett, Williams, Turner, Down syndrome, Duchenne muscular dystrophy, and others). English must be the primary language spoken at home, and the child cannot be blind or have a severe hearing impairment. About 120 families are being invited to join at sites like RTI International in North Carolina. Participants will receive PIXI across two phases with about 20 sessions in total, and researchers will look at family satisfaction, how well the program is carried out, and the child’s development and autism-related symptoms over time (through about age 3). The study is currently enrolling, with completion expected around 2026–2027.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Infants 15 months of age or younger who have received a diagnosis which was not sought solely due to parental concerns about the infant (e.g. diagnosis due to prenatal or newborn screening, cascade testing following diagnosis of a family member).
• • English must be the primary language spoken in the home because all assessment measures and intervention protocol are in English.
• Exclusion Criteria:
• • - Infants may not be blind or have a severe hearing impairment as the intervention and assessments are not appropriate for these children.