Improving health for parents and their youth with intellectual disabilities
Official title: Improving the Health of Parents and Their Adolescent and Transition-age Youth With Intellectual and Developmental Disabilities
Run by University of North Carolina, Chapel Hill · NCT05986305 · Data updated 2026-05-14
This study is no longer in our active list. It may have stopped recruiting or finished. The details below are as of 2026-05-14 and are kept for reference. Check ClinicalTrials.gov for its current status, or see similar studies below.
This study is testing two different ways to help parents of teens and young adults with intellectual disabilities become more active in their healthcare to see which one leads to better health for both parents and their kids.
Quick facts
| Study type | Interventional |
|---|---|
| Ages | 11 Years to 27 Years |
| Sex | All |
| Enrollment | 404 (estimated) |
| Sponsor | University of North Carolina, Chapel Hill Academic / other |
| Locations | 3 sites (Asheville, North Carolina and 2 other locations) |
| Trial ID | NCT05986305 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include parents of adolescents or young adults aged 11-27 with diagnosed or suspected intellectual or developmental disabilities residing in North Carolina.
✕Probably not a fit
Patients who may not benefit include those with emergency mental health needs or those unwilling to participate in recorded sessions.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This study compares the effectiveness of two approaches—Go Act, a tailored advocacy curriculum, and Peer parent-directed peer learning—in increasing parent activation for those with adolescents and young adults who have intellectual and developmental disabilities. The research aims to assess how these methods impact both parent and youth health outcomes, while also exploring whether increased parent activation mediates these effects. By focusing on enhancing advocacy skills, the study seeks to address the significant unmet healthcare needs faced by these families.
Why it matters
Potential benefit: If successful, this study could empower parents with advocacy skills, leading to improved health outcomes for both parents and their children.
How similar studies have gone: Previous research has shown that enhancing parent advocacy skills can lead to better health outcomes, indicating potential success for this approach.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: Parents * Bringing their adolescent or young adult child (age 11-27), with diagnosed or suspected intellectual or developmental disability, to one of the participating clinics * Able to attend group sessions * Able to give informed consent * Resident of North Carolina Youth * Being between the ages of 11 and 27 * Having diagnosed or suspected intellectual or developmental disability * Being present for a visit at one of the study clinics Exclusion Criteria: Parents * Having evidence of emergency mental health needs * Not willing to be recorded
Where it's running
-
The Carolina Institute for Developmental Disabilities
Carrboro, North Carolina, United States Recruiting -
UNC Adult Psychiatry Clinic
Chapel Hill, North Carolina, United States Recruiting -
Family Medicine at the Mountain Area Health Education Center
Asheville, North Carolina, United States Not yet recruiting
Study contacts
- Principal investigator: Kathleen C Thomas, PhD — University of North Carolina, Chapel Hill
- Study coordinator: Kathleen C Thomas, PhD
- Email: kathleen_thomas@unc.edu
- Phone: 9199663387
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Leopard: using multi-omics to boost genetic diagnosis for neurodevelopmental disorders
This study tests a multi-omics approach to find genetic explanations for neurodevelopmental disorders in people with moderate-to-severe intellectual disability.
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Regulating Together for Emotion Dysregulation in ASD and Intellectual Disability (group therapy)
This study tests a group therapy program for kids with autism and co-occurring intellectual disability to help them manage irritability and aggression, with sessions for both children and their caregivers.
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Digital games to improve visual memory and thinking skills in young adults with intellectual disability
This trial will test whether twice-weekly MentalUP digital game sessions help 18–35-year-olds with mild to moderate intellectual disability improve visual memory and cognitive skills.
-
Using preferred communication tools to reduce challenging behavior
This project will test whether using a person's favored communication tool (for example a touch talker or picture cards) helps keep behavior improvements and prevents relapse in people with intellectual or developmental disabilities who have little or no verbal speech.
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Deutetrabenazine for Tardive Dyskinesia in IDD
This study tests whether deutetrabenazine helps reduce tardive dyskinesia in people with intellectual and developmental disabilities who have not previously received this treatment.
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Theta Burst Stimulation for Emotion Regulation in Autism With Minimal Verbal Ability or Intellectual Disability
This trial tests whether intermittent theta burst stimulation to the left prefrontal cortex can help improve emotion regulation in people with autism who are minimally verbal or have an intellectual disability.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.