Information about Enrollment in the K-12 Registry at the Waisman Center and the Wisconsin Center for Education Research
What is the purpose of the K-12 Registry?
- The K-12 Registry serves as a connection between families and research projects at both the Waisman Center (WC) and the Wisconsin Center for Education Research (WCER) of the University of Wisconsin-Madison. It is a registry of families who have agreed to be contacted in a confidential manner about opportunities to participate in research studies outside of classroom time, such as after school, evenings and weekends. These studies are usually conducted on the University of Wisconsin-Madison campus.
- Research projects that recruit participants from the K-12 Registry are most often studying abilities and skills related to school such as language, memory, reading and mathematics. This research can contribute to revising teacher training and to helping children learn.
- Giving permission to be contacted about research opportunities does not commit you to participate in any particular study. Involvement with the K-12 Registry is completely voluntary, and your decision will not affect any services that you or your family receive from clinics or programs at the University of Wisconsin-Madison or your school district.
- All research projects that recruit participants through the K-12 Registry are approved by a University of Wisconsin-Madison Institutional Review Board. These Institutional Review Boards verify that research studies meet federal regulations for the protection of human participants.
How will the K-12 Registry work?
- The K-12 Registry will send you mailings with information about studies for which you might be eligible. In this mailing, we include information about the study and a reply form on which you can indicate whether you are interested in participating in the study or not. If you indicate on the reply form you are interested in participating, your name and contact information will be provided to the research team so you can learn more about participating. Your name and contact information is not disclosed to the researcher unless you indicate interest in the specific study on the reply form. Within 3 weeks of the mailing, a member of the K-12 Registry staff may follow up with a phone call to make sure you received the information packet and to connect you to the research team if you have questions about the study.
- The K-12 Registry keeps records of study participation and takes measures to make sure that you are contacted only on an occasional basis. In particular, once you agree to participate in a study, the K-12 Registry will not contact you again for 6 to 12 months, depending on the time commitment for the studies involved.
- A K-12 Registry staff person may contact you once a year to see if your address and phone number are correct.
- Although there are no direct benefits to being enrolled in the K-12 Registry, the K-12 Registry may inform you about Waisman Center and WCER events. As an act of appreciation to registry members, the Waisman Center occasionally offers free educational programs about child development and developmental disabilities as well as a newsletter that summarizes research findings. You do not have to participate in a study to receive an invitation to a program or to receive the newsletter.
What information will be recorded in the K-12 Registry?
- If you agree to be included in the registry, basic contact information about your family will be recorded, including names of parent(s) or guardian(s), home address, and telephone number; as well as name, gender and birth dates of all children in the family.
- We also ask you to provide some background information about your family, such as the language spoken at your home, race, and ethnicity. In order to match families with studies that they might be eligible for, we also ask you to report the nature of any medical condition, diagnosis or special needs that children may have. This information will be recorded in the registry. Please note that answering these questions is optional; you may still enroll in the K-12 Registry even if you decline to answer these questions.
How will my rights and privacy be protected?
- The K-12 Registry follows strict federal, state and university guidelines to safeguard individual rights and privacy. It stores and handles information in the registry with strict regard for confidentiality. A University of Wisconsin–Madison Institutional Review Board reviews K-12 Registry procedures annually to make sure we meet requirements that protect the rights of individuals involved in research.
- All information contained in the registry is considered private and confidential. Access to information in the registry is restricted to authorized K-12 Registry personnel. All data are stored in a secure location with physical, electronic and procedural safeguards. No information is disclosed to outside parties except, as indicated above, when you indicate interest on the study reply form the K-12 Registry has sent you. We want to inform you that there is the slight possibility that your contact information could accidentally become known to researchers without your prior consent; however, we do not expect this to happen and K-12 Registry staff members take every precaution to avoid a breach of confidentiality.
- In some cases, your information could be reviewed by representatives of UW, research sponsors, or government agencies for purposes of quality control or safety. It is also possible, but not likely, that there may be instances in which information must be disclosed as required by state or federal law.
If I register with K-12 Registry, how long will my permission last? Can I change my mind?
- Your enrollment is valid until you request to withdraw from the research registry, or at the time that the minor turns 18 years old.
- To withdraw from the research registry, simply notify the K-12 Registry by mail at Waisman Center, University of Wisconsin-Madison, 1500 Highland Avenue Rm 373, Madison, WI 53705. Or, you can reach us via telephone at 1-800-965-9205, or if you live in the Madison area, call 608-263-5192, or via e-mail at email@example.com.
What if I have questions?
- If you have any questions about the research registry, contact the K-12 Registry at 1-800-965-9205, or if you live in the Madison area, call 608-263-5192, or via e-mail at firstname.lastname@example.org.
- If you have questions about your rights as a research participant or concerns about any research project, contact the University of Wisconsin-Madison Social and Behavioral Sciences Institutional Review Board at 608-263-2320.
Yes, I want to enroll.By clicking ‘Yes, I want to enroll’ I am voluntarily giving permission for the K-12 Registry to enroll my family for the purpose of being contacted about participation in future research studies at the Waisman Center and Wisconsin Center for Education Research. I will be directed to a secure webpage to complete enrollment.