Research Registries
The Research Participation Core maintains five registries of potential research participants. Investigators can request lists of potential research participants from these registries in groups of 25 or less. Methods are in place to prevent overlap of families in the various registries. Selection criteria can be delineated, such as age, geographic area, or developmental disability diagnosis. Consultation with RPC staff is available to help you decide which registry will meet your needs. Please refer to our service request forms for more information.
Birth Registry
Using birth announcements printed in the newspaper from Madison hospitals, the Birth Registry contains approximately 35,000 records of families with children ranging in age from two-weeks to 23 years. These children are representative of the Dane County's population and are mostly typically developing. About 2,000 newborns and their families are added each year to the Birth Registry.
When investigators request a list of potential participants from the Birth Registry, the Research Participation Core will provide a list of names along with mailing labels to the research team. The research team will then mail letters of invitation to their study to the families on the list and may follow up with a phone call.
Click here for registry request form
Developmental Disabilities Registry
The Research Participation Core maintains a registry of individuals and families who have a member diagnosed with a developmental disability, who have expressed interest in learning about research studies for which they may be eligible. The registry contains approximately 1600 family records and the ages of diagnosed individuals range from 1 to 64 years. While multiple developmental disabilities are represented, there is a high concentration of individuals with Down syndrome and autism spectrum disorders. Individuals and families are enrolled in the Developmental Disabilities Database through numerous referral sources, including the Waisman Center's Developmental Disabilities Clinic, Genetics Clinic, and RPC Outreach efforts.
The Research Participation Core contacts potential study participants on behalf of investigators, thus providing a centralized and confidential manner of communication. The Core then provides investigators with a list of those individuals or families who have consented to participate.
Click here for registry request form
K-12 Registry
In collaboration with the Wisconsin Center for Education Research (WCER), the Research Participation Core 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 that they may be eligible for. The K-12 Registry contains information for approximately 1,000 children. Many records include information about family demographics and data about the utilization of special education services. Some families have also agreed to have standardized test score information stored in the registry.
When investigators recruit from the K-12 Registry, the Research Participation Core will contact families on behalf of the research team. The RPC will then provide the team with a list of those families who have consented to participate.
Request form