PIXI for Neurogenetic Disorders

Recruiting in Palo Alto (17 mi)

Overseen by Anne Wheeler, PhD

Age: Any Age

Sex: Any

Travel: May Be Covered

Time Reimbursement: Varies

Trial Phase: Academic

Waitlist Available

Sponsor: RTI International

No Placebo Group

Trial Summary

What is the purpose of this trial?

This trial tests a program called PIXI, which helps parents of infants with genetic disorders. The program educates parents about their baby's condition, coaches them on how to interact with their baby, and provides family support. The goal is to improve the baby's development and family well-being.

Research Team

Anne Wheeler, PhD

Principal Investigator

RTI International

Eligibility Criteria

This trial is for infants under 12 months old diagnosed with certain neurogenetic disorders, such as Down Syndrome or Duchenne Muscular Dystrophy. The family must primarily speak English at home. Infants who are blind or have severe hearing impairments cannot participate.

Inclusion Criteria

My infant was diagnosed through screening, not just because of my concerns.

English is the main language spoken in my home.

Exclusion Criteria

My child is not blind and does not have severe hearing loss.

Treatment Details

Interventions

• Parent-Infant Inter(X)Action Intervention (PIXI) (Behavioural Intervention)

Trial Overview The PIXI program is being tested to support infant development and help parents of children with neurogenetic disorders. It includes parent education, coaching on interaction with their child, and well-being support, along with assessments of the child's and family's progress.

Participant Groups

Group I: Infants with a rare neurogenetic condition and their parent/primary caregiver(s) Experimental Treatment 1 Intervention

PIXI

Who Is Running the Clinical Trial?

RTI International

Lead Sponsor

Trials

201

Recruited

942,000+

Dr. Anuja Purohit

RTI International

Chief Medical Officer

MD from Duke University School of Medicine

Tim J. Gabel

RTI International

Chief Executive Officer since 2022

Adjunct appointments at University of Wyoming and UNC Gillings School of Global Public Health

University of North Carolina, Chapel Hill

Collaborator

Trials

1,588

Recruited

4,364,000+

Dr. Peggy P. McNaull

University of North Carolina, Chapel Hill

Chief Medical Officer

MD from Louisiana State University School of Medicine

Dr. Lynne Fiscus

University of North Carolina, Chapel Hill

Chief Executive Officer since 2020

MD from Georgetown University, MPH from UNC