Do you provide services to children or adults with autism spectrum disorders, fragile x syndrome, or to typically developing children? Do you
know families or individuals who may want to participate in research?
Who We Are
The Research Participant Registry (RPR) Core is a unit of the Carolina Institute for Developmental Disabilities at UNC. The Core supports,
promotes, and publicizes research on developmental disabilities and child development.
What We Do
The RPR Core maintains registries of individuals and families who want to be informed about research opportunities at the University of North Carolina.
It is an efficient and confidential way to identify and contact eligible participants about studies and inform members about the latest advancements in
research on disabilities.
Who Can Join the Registries
Parents of typically developing babies and children living in Wake, Durham, Chatham, Orange, and Alamance counties in North Carolina may enroll their
children in the Child Development Research Registry.
Adults with an autism spectrum disorder and parents of children with an ASD living in North Carolina may enroll in the NC Autism Registry.
Adults with fragile X and parents of children with fragile X syndrome living throughout the United States may enroll in the Fragile X Registry.
Types of Research
There are many different types of research at UNC with various studies focusing on genetics, child development, brain growth, development, and
function, epidemiology and risk factors, early identification of developmental disorders, behavior, clinical trials, and behavioral intervention. Some
studies involve travel; others may be completed via phone, internet, or mail correspondence.
Rights and Privacy
Privacy is critical and to maintain it the RPR Core adheres to strict federal, state, and university regulations to safeguard individual rights and
privacy. Research participation is always voluntary; Registry members are never obligated to participate in studies.
Please Help Us
Sharing information about the Registries with your patients is a great way to support research. We will be happy to send you brochures so that
you can display them in your office or waiting area. The brochures include an interest form and a postage paid envelope. Families can
explore the Registries and contact us at their convenience.
Information and Materials
Request for Registry Brochures
Please fill out the form below is you would like us to send brochures to your office.
Your Name:
Profession:
Agency/Practice Name
Address
Phone
Email Address:
How did you hear about the Registry?
Please tell us about the population you serve in your practice:
Send
Please feel free to share our brochures and our website with families and individuals who are interested. We appreciate your help, which will make a difference through enabling research.