Autism Registry Information For Researchers

This registry recruits residents of North Carolina who have a confirmed autism diagnosis. This registry is populated primarily through a collaboration with the UNC TEACCH Autism Program, a statewide agency specializing in autism and clinics at the Carolina Institute for Developmental Disabilities. Individuals are also referred to the Registry by advocacy organizations, service providers, and the Registry website. Online registrants self-report their autism and other medical diagnoses.

This registry is a national database for individuals with a confirmed diagnosis of FXS. It is jointly owned and operated with the Waisman Center (University of Wisconsin) IDDRC Research Participant Core. Individuals can enroll through a public web site (fragilexregistry.org) and are referred by advocacy organizations, genetic clinics, and other service providers. Participants must provide records confirming their diagnosis of FXS.

This registry includes individuals 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. They are enrolled through specialized UNC clinics and may also self-refer online.

This registry is a database of children residing within an hour drive of the UNC Chapel Hill campus. Recruitment letters are sent to families of 4‐6-month-old infants who were born in the region inviting them to enroll their infants and other children. Most of these children are aged one to eleven years. Parents may also enroll their children via the registry website. Parents are asked to provide basic demographic information and disclose any known medical disorders.

The Research Participant Registry 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 registries
• Assisting with grant preparation, providing fee estimates for 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

Please refer to the Policies and Procedures document for more information

If you are a researcher interested in using the IDDRC Research Participant Registries, explore below to find answers to frequently asked questions.

• How can I get access to research participants?

The Research Registries are available to investigators who have been approved for IDDRC membership. After you have been approved for membership, you can then request access to the Research Registries.

See below for application information.

• What information is available in the Registry about participants?

Each of the registries has contact information and limited demographic information for individuals or parents of children. The autism and fragile X syndrome registries also have diagnostic/medical confirmation of an autism or fragile X syndrome 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. The Director will send information about rates when he receives your Service Request form.

• 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.

• 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 principal investigator.

• 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 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).

The time to apply for access to the Research Registries 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 the highest) and date of service request to the Research Registry Core. The Research Registries are available to investigators who have been approved for IDDRC membership. After you have been approved for membership, you can then request access to the Research Registries.

All publications and presentations that include assistance from the UNC IDDRC should acknowledge this support using this language: “Assistance for this project was provided by the UNC Intellectual and Developmental Disabilities Research Center (NICHD; P50 HD103573).”