The University of Alabama Intellectual Disabilities Participant Registry (UAIDPR) was established in 2009 through a grant from the Eunice K. Shriver Institute of Child Health and Human Development of the National Institutes of Health. The purpose of the UAIDPR is to match children and adults who have intellectual disabilities to appropriate research studies. If your family would like to help researchers better understand the challenges of intellectual disability and how to meet them, consider enrolling in the UAIDPR. All studies served by the UAIDPR are
- low-risk for participants
- pre-screened for ethical treatment of participants
Intellectual disability is a condition that results in substantial limitations in cognitive and adaptive functioning that begin during infancy or childhood. Some examples are
- Down syndrome
- fragile X syndrome
- fetal alcohol syndrome
- Williams syndrome
In many cases, there is no known syndrome or cause of one’s intellectual disability. The UAIDPR is open to people with any type of intellectual disability.
The UAIDPR is actively recruiting registry participants in the states of
Registry participants may be any age. Typically, a parent or legally authorized agent enrolls the participant into the registry. However, participants who are adults and legally independent may enroll on their own behalf. To enroll in the registry the parent or legally authorized agent (and in some cases the participant) signs a consent form and completes a brief background questionnaire. We keep this information in a secure database to use when matching participants to research studies.
The UAIDPR works with researchers in the recruitment states to identify participants for their studies on intellectual disability. All studies must be low-risk for participants and approved by the researcher’s Institutional Review Board for research ethics. Most studies concern
and require participants to complete questionnaires, standardized tests, or computer tasks. Some studies require participants to travel to the study site, and other studies do not. When a study is available that matches a participant, the UAIDPR contacts the participant or his/her parent or legally authorized agent and invites him or her to participate in the study. It is always the choice of the participant and/or the parent to participate in a particular study or to decline. Joining the registry does not obligate anyone to participate in a research study.