CompletedNot Applicable

Development and Validation of an Online Neurobehavioral Evaluation Tool for PTEN Patients

United States, United Kingdom300 participantsStarted 2021-09-09

Plain-language summary

The purpose of this study is to develop a survey completed by parents, caregivers, or other informants that evaluates several important domains of functioning relevant to individuals with neurodevelopmental disorders, including autism spectrum disorder and people with genetic syndromes. Participation in this research will include assisting the research team in the development of the survey measures.

Who can participate

Age range3 Years – 45 Years

SexALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * Has a PTEN Hamartoma Tumor Syndrome diagnosis with or without a neurodevelopment disorder * Access to a tablet (10+ inch screen), laptop, or desktop computer * Access to reliable internet * Able to attend to short videos (30 plus seconds) * Able to hear audio from a computer device * Able to see without corrective lenses

What they're measuring

Social Communication Interaction

Timeframe: Baseline

Social Communication Interaction

Timeframe: One month follow up

Social Communication Interaction

Timeframe: Four month follow up

Daily Living Skills

Timeframe: Baseline

Daily Living Skills

Timeframe: One month follow up

Daily Living Skills

Timeframe: Four months later

Trial details

NCT IDNCT05671107

SponsorJohn Carroll University

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2024-06-01

View on ClinicalTrials.gov More PTEN Hamartoma Tumor Syndrome trials