The Carolina Institute for Developmental Disabilities at UNC
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The Carolina Institute includes:

Research Participant Registry Core


Bringing Together
Families & Researchers

Core Personnel & Contacts

Associate Director:
Renee Clark, M.S.W.
Family Recruitment Coordinator:
Mary Hannah Currin, B.A.
Registry Consent Specialist:
Macie Rush, B.S.

Thank you for your interest in research at UNC.

Announcements & Events

2020 International Fragile X Conference

July 16-19 in Orlando, FL, this conference features family, self-advocate and research tracks—great information for the fragile X community.

2020 Community Talk Series

Held on Wednesdays from 6:30 – 8 pm at the CIDD Building in Carrboro, NC. Free and all are welcome. Slides and videos are posted on-line afterwards.

NC Autism Society Conference 2020

March 27-28 in Charlotte, NC, the conference features an exciting line up of speakers to celebrate ASNC’s 50th anniversary. Come say hello in the exhibit hall. We will have valuable information on UNC resources and research.

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. http://news.unchealthcare.org/news/2016/april/the-fungicide-effect

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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