Can early parent coaching help infants with rare genetic disorders thrive?

NCT ID NCT03836300

ENROLLING_BY_INVITATION Disease control Sponsor: RTI International Source: ClinicalTrials.gov ↗

First seen Jul 13, 2026 · Last updated Jul 14, 2026 · Updated 1 time

Summary

This study tests a program called PIXI that coaches parents of infants diagnosed with rare neurogenetic disorders (such as Fragile X, Angelman, or Down syndrome) during the first year of life. The program combines education about the disorder, guided parent-child interaction activities, and support for family well-being. Researchers are checking whether families find the program helpful and practical, and whether it can be delivered consistently.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

Active substance: Parent-Infant Inter(X)action Intervention (PIXI)
What this could lead to: If successful, this program could provide a practical, supportive model for families of infants with rare neurogenetic disorders, potentially improving early development and parent-child interaction.
What could go wrong: This is a small pilot study focused on feasibility and acceptability, not on proving medical benefit. Results may not apply to all families or disorders, and the intervention may not show clear developmental gains.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Get updates

Get notified about this study

Sign up to get updates when this study changes or when new studies for ANGELMAN SYNDROME are added.

Our safety recommendation!

By submitting, you agree to our Terms of use

Conditions

The condition(s) this trial relates to.

Angelman syndrome developmental disability DiGeorge syndrome Down syndrome Duchenne muscular dystrophy fragile X syndrome Klinefelter syndrome Phelan-McDermid syndrome Prader-Willi syndrome Rett syndrome Smith-Magenis syndrome tuberous sclerosis Turner syndrome velocardiofacial syndrome Williams syndrome

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

ANGELMAN SYNDROME CHROMOSOME 22Q11.2 DELETION SYNDROME DOWN SYNDROME DUCHENNE MUSCULAR DYSTROPHY DUP15Q SYNDROME FRAGILE X SYNDROME KLINEFELTER SYNDROME PHELAN-MCDERMID SYNDROME PRADER-WILLI SYNDROME RETT SYNDROME SMITH MAGENIS SYNDROME TUBEROUS SCLEROSIS TURNER SYNDROME WILLIAMS SYNDROME

Contacts and locations

Show contact details

Locations

RTI International

Research Triangle Park, North Carolina, 27709, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.