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Wisconsin Pediatric Cardiac Registry
Working to prevent congenital heart defects
What is the Wisconsin Pediatric Cardiac Registry?
What is the purpose of the registry?
Do I have to participate?
How can I participate?
Why should I participate?
Will the information I give be kept confidential?
What organizations participate in the registry?
How can I contact the registry?
What is the Wisconsin Pediatric Cardiac Registry?
The Wisconsin Pediatric Cardiac Registry is an official record of infants born in Wisconsin with congenital heart defects. Since Jan. 1, 2000, our goal has been to record every child born with a congenital heart defect on the registry.
The registry includes infants' and parents' names, address, infant's diagnosis and date of birth. In addition, parents can provide more specific information about their family's genetic history and possible environmental exposures before and during pregnancy. This registry includes similar information for a comparison group of children who do not have a heart defect.
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What is the purpose of the registry?
Congenital heart defects affect about eight in 1,000 children in the U.S. Although pediatric heart surgery, medicine and procedures continue to improve, preventing heart disease in children is a common goal among Wisconsin pediatric cardiologists and surgeons. The registry helps professionals research the causes of these heart problems and possibly prevent them.
Data from the registry, without individual infants' or parents' names, is provided at the discretion of the WPCR to professionals researching the causes of congenital heart defects. Information is provided only after the researcher has received approval from their organization's institutional review board.
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Do I have to participate?
You do not have to participate in this research study. If you choose to participate in this study, you may withdraw from the study at any time and the quality of care you receive from the medical staff will not change.
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How can I participate?
A registry staff member will explain the three levels of participation:
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Information submitted by your child's pediatric cardiologist.
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A survey, including questions about your family's genetic history and possible exposure to environmental elements before and during pregnancy. You will be asked to sign a consent form before completing the survey.
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A genetic sample, such as blood or saliva, for further testing. A separate consent form is needed for each family member who agrees to participate in the genetic study. |
Why should I participate?
The information you provide is important to researchers working to prevent congenital heart defects. There is no cost or compensation to you for filling out the survey or participating in the genetic study.
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Will the information I give be kept confidential?
Yes. All the information you provide will remain private.
Researchers and other registry members only will have access to blind data, which means they will see numbers but not your name. They may present or publish data from their studies, but you or your child never will be identified. Registry members include physicians and researchers from health care institutions statewide.
Access to data on the registry Web site is restricted and strictly confidential. Only registry staff has access to specific information. No other individual or institution will know about your participation in the survey or genetic study.
The Wisconsin Pediatric Cardiac Registry has a certificate of confidentiality from the National Institutes of Health.
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What organizations are participating in the registry?
Lead institution: Children's Hospital of Wisconsin, Milwaukee.
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How can I contact the registry?
Wisconsin Pediatric Cardiac Registry staff are available to help you with the registration process. Contact us at (414) 266-2325, toll-free (877) 809-9727 or by e-mail wpcr@mcw.edu.
If you have questions while filling out the survey, contact your child's cardiologist or registry staff for help.
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