The Clinical Translational Core (CTC) maintains four registries of potential research participants. Investigators can request lists of potential research participants from these registries for recruitment into UW-IRB approved studies. Selection criteria can be delineated, such as by age and geographic area. Consultation with CTC staff is available to help you decide which registry will meet your needs. Please submit questions or service request forms to firstname.lastname@example.org.
The Infant & Child Registry, aka Birth Registry, has been in existence since 1989 and is approved by the UW-Madison Social and Behavioral Sciences IRB. The Infant & Child Registry has served as a source of families of typically developing infants and young children for Waisman Center IDDRC investigators focused on understanding emerging social, perceptual, linguistic, and cognitive capabilities or who need typically developing comparison groups in studies of young children with IDD.
Prior to 2014, enrollment was almost exclusively through birth announcements printed in the newspaper from Madison hospitals. Since the publication of birth announcements ceased at the end of 2013, recruitment has occurred primarily through two local birth hospitals and local pediatric and family medicine clinics during 4-month well child checks. Parents enroll their children online or by returning an enrollment form by mail.
As of January 2016, the registry includes ~8,800 children age 4 years and under. However, individuals remain in the registry beyond this age and thus the registry has a secondary use in supporting research on older children. Currently, the registry includes ~25,000 children and adolescents over the age of 4, who were entered into the registry at birth or during childhood.
The CTC maintains a registry of individuals and families who have a member diagnosed with an intellectual or developmental disability, who have expressed interest in learning about research studies for which they may be eligible. While multiple developmental disabilities are represented, there is a high concentration of individuals with Down syndrome and autism spectrum disorder. Individuals and families are enrolled in the Intellectual and Developmental Disabilities Registry through numerous referral sources, including the Waisman Center's Autism & Developmental Disabilities Clinic, Down Syndrome Clinic, Genetics Clinic, and various outreach efforts. The CTC contacts potential study participants on behalf of investigators, thus providing a centralized and confidential manner of communication. The CTC then provides investigators with a list of those individuals or families who have indicated interest in participating in their particular study.
In collaboration with the University of North Carolina at Chapel Hill, the CTC maintains a registry of children and adults from across the country who have fragile X or a fragile X-associated disorder. Individuals enrolled in the Fragile X Registry have provided laboratory confirmation of their fragile X diagnosis and consented to being contacted about research projects they may be eligible for. When investigators recruit from the Fragile X Registry, the CTC will contact families on behalf of the research team. The CTC then provides the research team with a list of those families who have indicated interest in participating in their study.
In collaboration with the Wisconsin Center for Education Research (WCER), the CTC maintains a registry of families with children who are students in the Madison Metropolitan School District, who have consented to being contacted about research projects they may be eligible for. The K-12 Registry contains information for approximately 2,000 children. Many records include information about family demographics and data about the utilization of special education services. When investigators recruit from the K-12 Registry, the CTC will contact families on behalf of the research team. The CTC then provides the research team with a list of those families who indicate interest in participating in their study.