The Carolina Institute for Developmental Disabilities at UNC
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Research Participant Registry Core

Announcements & Events

2021 Virtual Community Talk Series

All are welcome. Join us to learn about recent advances with developmental disabilities. Meetings via Zoom- Time: 6:30 – 8:00pm. Free. Contact to register. The schedule, slides and videos for all talks are posted.

International Fragile X Conference Went Virtual in 2020

The presentations are still available on-line. Kerry McCarthy Adams, a North Carolina parent’s presentation, “A Fragile X Journey Lessons in Navigation, Trusting your Inner Compass” is an excellent resource for newly diagnosed families. Contact for information.

Autism Parenting Magazine: Why It is Important to Embrace Autism Research

This post highlights the ways research can impact the daily lives of autistic individuals, how to find easy-to-understand articles, and how to recognize reputable and reliable results.

Research Findings

Early Predictors of Autism in Infancy

Researchers in the Infant Brain Imaging Study (IBIS) use MRIs to image the brains of infants at high risk of autism. The have discovered differences as early as 6 months of age in the children who were later diagnosed with autism. NIH has funded the IBIS national network to continue their study of baby siblings of children with autism. Their goal is to find ways to identify very young children at high risk of autism and to inform treatments to optimize developmental outcomes.

Summary of Advances in Autism Research

The US Interagency Autism Coordinating committee selected two UNC studies for their list of significant advances in autism research.

SPARK Snapshot 2: Adults with Autism

This is Report 2 from the SPARK for Autism Study. These are findings reported by the independent adults (do not have a guardian) who are participating in SPARK.

SPARK Snapshot 1

This is Report 1 from the SPARK for Autism Study. These are interesting findings from information that families have provided to the study.

SPARK Study Results: Treatment Patterns in Children with Autism in the US

More than 5,000 SPARK participants responded to a survey study about what types of treatment children ages 3 to 17 received (other than medication).

The Fungicide Effect on Brain Cells

Mark Zylka’s research into chemicals altering gene transcription in neurons gains international attention. View video on this site.

Autism Prevalence Rates in NC & US Updated by CDC in 2020

Dr. Julie Daniels, director of the North Carolina Surveillance site of the CDC Autism Monitoring Network, releases the report of the prevalence rates of children in NC who were born in 2012 and 2008. The rates in the North Carolina cohort was higher than the national cohort.

TEACCH Long-Term Adult Outcomes: Project Summary

Preliminary findings from the survey of the Long-Term Outcomes study of adults who were diagnosed with an autism spectrum disorder by the TEACCH Autism Program between 1965 and 2000.

MRIs Link Impaired Brain Activity to Difficulty Regulating Emotions in Autism

A summary of recently published research findings from a UNC Functional Neuroimaging Study in the Journal of Autism and Developmental Disorders

Health Issues in Fragile X Premutation Carriers

Dr. Marsha Mailick presented research findings at the 2019 NICHD Gatlinburg Conference. She used electronic medical records to study the health of males and females with the fragile X premutation gene (carriers). She found that FXS carriers experience more health difficulties over their life span when compared to the general population.

FPG Autism Researchers Catalog of Evidence Based Practices

The authors reviewed 29,000 articles to locate the soundest evidenced-based interventions for children and youth with autism. AN UPDATED VERSION WILL BE RELEASED IN 2020.

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