Sharing results and supporting families with genetic risk for autism
Core D: Dissemination and Outreach Core
['FUNDING_OTHER'] · COLUMBIA UNIVERSITY HEALTH SCIENCES · NIH-11176968
This project shares genetic screening results and provides information, outreach, and family support to parents of young children with identified genetic risk for autism.
Quick facts
| Phase | ['FUNDING_OTHER'] |
|---|---|
| Study type | Nih_funding |
| Sex | All |
| Sponsor | COLUMBIA UNIVERSITY HEALTH SCIENCES (nih funded) |
| Locations | 1 site (NEW YORK, UNITED STATES) |
| Trial ID | NIH-11176968 on ClinicalTrials.gov |
What this research studies
The Dissemination and Outreach Core partners with families whose infants or young children (0–11 years) have genetic markers linked to autism and gives parents genetic screening results before clinical signs appear. The team will use webinars, town halls, the PROGRESS website, and one-on-one or group navigation sessions to explain findings and connect families to services. Outreach prioritizes minoritized communities and incorporates feedback from autistic individuals, families, and advisory groups to shape materials and events. The core also helps train new investigators and quickly share center findings with clinicians, educators, and community stakeholders.
Who could benefit from this research
Good fit: Families of infants or children roughly 0–11 years old who have been identified as having a genetic risk for autism or who are interested in genetic screening and early support are ideal candidates.
Not a fit: Adults with autism who are not caregivers of young children or people without genetic risk information are unlikely to directly benefit from this core’s activities.
Why it matters
Potential benefit: Families could receive earlier information, practical support, and connections to services that may help access early interventions and resources for their children.
How similar studies have performed: Family navigation and outreach programs in autism have helped families connect to services before, but providing pre-symptomatic genetic results and broad community dissemination is a newer approach with ethical considerations.
Where this research is happening
NEW YORK, UNITED STATES
- COLUMBIA UNIVERSITY HEALTH SCIENCES — NEW YORK, UNITED STATES (ACTIVE)
Researchers
- Principal investigator: VEENSTRA-VANDERWEELE, JEREMY — COLUMBIA UNIVERSITY HEALTH SCIENCES
- Study coordinator: VEENSTRA-VANDERWEELE, JEREMY
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page below.
Conditions: Autistic Disorder