Who We Are
The Research Participant Registry (RPR) Core is a research unit within the Carolina Institute for Developmental Disabilities (CIDD). The RPR Core
supports research projects on developmental disabilities at UNC. The Core has four registries:
The Child Development Registry is a
Triangle-area registry (NC counties: Wake, Durham, Chatham, Orange, and Alamance) of typically developing infants and children. Investigators can use
this registry to recruit participants and age matched control subjects, and to pilot test assessment measures and protocols.
The NC Autism Registry is a
state-wide registry of children and adults with autism spectrum disorders.
The Fragile X Registry is a national
registry of children and adults with FXS.
Intellectual and Developmental Disorders Registry is a national registry of adults and children with specific
syndromes such as Angelman, Down, Prader-Willi, Rett, Turner, Williams, and others. It also includes individuals with developmental delay, ADHD, communication delay and
intellectual disabilities.
For approved/registered researchers, the Core can assist with recruitment, public relations and referral source development, and grant
preparation. Please refer to the Policies and Procedures document for more information.
Services Provided by the Core
The RPR Core is available to approved Intellectual and Developmental Disabilities Research Center (IDDRC) researchers to recruit participants for their
research.
We accomplish this by:
- Contacting potential participants from the three active registries;
- Assisting with grant preparation, providing fee estimates for core services, a sample
description, a letter of support, and consultation on recruitment strategies and materials;
- Advertising studies at conferences, presentations, and community referral sites;
- Disseminating research findings to registry members and the public.
Using the Core
UNC researchers who have been approved for IDDRC membership are eligible to access core services. To be considered for membership in the IDDRC, please
visit the Membership and Access Information page. IDDRC Membership and Access Information
The time to apply for access to the RPR Core is during grant preparation. Researchers must have approval from the Core Director before writing
the Registry into a grant proposal. The registries are in high demand, and access is prioritized by the funding source (NIH being highest) and date of
service request to the RPR Core.
Researchers should submit a RPR Core Service Request Form for each new grant submission using the on-line Service Request form. The Core Manager
will be happy to provide information and advise investigators who wish to use the Core.
Please refer to the Policies and Procedures manual for complete details about Core functions and usage.
Researchers FAQs
How can I get access to research participants?
Submit an application for Core Services to the IDDRC Administrative Core and submit an on-line Service Registry form to the Registry (on RPRC webpage).
What information is available in the Registry about participants
Each of the three registries have contact information and limited demographic information for individuals or parents of children. The Autism and FXS
registries also have diagnostic/medical confirmation of ASD or FXS diagnosis. This information is confidential and used only to determine eligibility
for studies. It cannot be released to research projects except with written consent from the Registry member.
What does it cost?
Fees are necessary to support the cost of maintaining the registries. They are determined based on your funding source and sample size. The Registry manager can provide an estimate after you submit a Service Request Form
containing information about your proposed study.
When does my access to the Registry expire?
Permission to recruit from the Registry is granted for a specific project/study for the duration of that project.
May I use the Registry to recruit for more than one study?
Yes, researchers may have simultaneous approval for multiple studies.
How do I get matched with potential participants?
The Registry manager will conduct a query of the database and send referrals for your study. We will forward reply forms from individuals who
want to participate.
If my study is longitudinal, will families be asked to participate in other research projects through the Registry?
Families who are participating in a research study will not be contacted for another study until their participation in the first study has ended to
prevent negatively affecting data collected for either study. Exceptions may be made with the consent of the PI.
What do I need to communicate to my IRB if I want to use the Registry?
Reference the Registry as a recruitment source in your IRB application. The Registry is reviewed and approved by the UNC IRB, Study #01-0843 and Study #07-0279.
What do I have to report after recruiting participants from the Registry?
You will provide monthly updates of the participants' status in your study including whether they enrolled or declined, were excluded and why,
consented to participate, and when they completed the study. You are also responsible for providing a summary of your study's findings to each
participant.
Can I use the Registry for clinical trials?
Yes, you may recruit for clinical trials from the Registry as resources permit.
Can I ask families permission for my research project to contact them again in the future?
The Consent Agreement with Registry participants specifies that they will be contacted by the Registry so that they may accept or decline to
participate confidentially. You may request that participants give permission to be contacted again, but you may not contact them again
yourself before checking their availability with the Registry manager. Research participants are a shared resource, and some participants may not be
re-contacted for various reasons (e.g., they are involved in another study, they decline to participate in your study).
Whom should I contact?
Renee Clark, M.S.W. Core Manager
Telephone: (919) 966-5232
Email: renee_clark@unc.edu
Fax: (919) 966-7080
Registry Office Location:
Bioinformatics Building; Mason Farm Road in Chapel Hill, NC.
Mailing Address:
Campus Box 3366
UNC-CH
Chapel Hill, NC27599
Grant Submission Date (mm/dd/yy):
FXS Recruitment Catchment Area (Check all that apply):
*Autism: North Carolina Only.
*Child Development: Within 1 hour radius of Chapel Hill.