One of the main purposes of the UAIDPR is to help researchers find participants with intellectual disability for their research studies. The registry serves researchers in the states of Alabama, Mississippi, Georgia, and Florida – the states that have worked with us to develop the registry. All studies served by the registry must meet the following basic criteria:
• Must be approved by the researcher’s Institutional Review Board (IRB).
• Must involve minimal risk to participants
• Must be behavioral in nature (i.e., not medical research)
• Must be not-for-profit
The identities of participants in the registry are protected until they agree to be contacted for a specific study. Researchers who wish to use the registry should submit an IRB-approved plan for scientific research that is not-for-profit and minimal risk for participants. This plan should include the number and types of participants desired for the project, a lay description of the project (2-4 pages), copies of the required consent forms, and a copy of the IRB document and signed approval sheet. In addition, a Registry Use Agreement form, signed by the researcher, must be submitted. These materials may be submitted by email or postal mail.
When a project is approved for registry support, the Registry Coordinator contacts potential participants to tell them about the study and ask them if they would like to participate. This includes discussion of the informed consent form for the recruiting study. When the potential participant agrees, the Registry Coordinator provides the name and contact information of the potential participant to the researcher. The researcher is required to contribute a registry-use fee to help sustain the registry. The amount of this fee will be determined based on the number of potential participants identified for a study.
*We may request data transfer of limited study information such as standardized test scores. This will assist the study in matching participants to future studies and will require inclusion within the study IRB protocol.*
Researchers, please feel free to call or email us to discuss your use of the registry. We recommend an initial contact before you send materials. Phone (205) 348-4253; email firstname.lastname@example.org.