Research Registries

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 ctc@waisman.wisc.edu.

Infant & Child Registry

The Infant & Child Registry, aka Birth Registry, has been in existence since 1989 and is approved by the UW-Madison Social/Behavioral Science 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.  

This registry is available to Waisman Center investigators. Please click here for rates.

Intellectual and Developmental Disabilities Registry

The Intellectual and Developmental Disabilities Registry enrolls individuals and families who have a member diagnosed with an intellectual or developmental disability, who have consented to 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. Most families are from Wisconsin or surrounding states. 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.

This registry is available to Waisman Center investigators. Please click here for rates.

Fragile X Research Registry

In collaboration with the University of North Carolina at Chapel Hill, the Fragile X Research Registry enrolls 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.

This registry is available to Waisman Center investigators and other researchers across the United States.  Please visit https://www.fragilexregistry.org/ for more information.

K-12 Registry

In collaboration with the Wisconsin Center for Education Research (WCER), the K-12 Registry enrolls families with school-aged children, most of whom are students in the Madison Metropolitan School District.  Parents consent to being contacted about research projects for which they may be eligible. 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.

This registry is available to Waisman Center and WCER investigators. Please click here for rates.