The Iowa Registry for Congenital and Inherited Disorders provides data for several research projects. Brief descriptions of some of these projects are presented below:
Iowa Child Health Study
Funding Agency: National Institutes of Health
This is a population-based study to investigate genetic and environmental risk factors for cleft lip and/or cleft palate (CL/P). Iowa women with a pregnancy affected by a CL/P and women with an unaffected pregnancy are asked to report information on family history, medical history, nutrition, lifestyle, and occupation to study environmental factors that may contribute to the development of CL/P. Biologic samples are collected from families to study genetic factors that may contribute to CL/P.
National Birth Defects Prevention Study
Funding Agency: Centers for Disease Control and Prevention
This is a population-based study to investigate genetic and environmental risk factors for 31 major birth defects. This study is a combined effort of the Iowa Registry and registries in seven other states. Women with a pregnancy affected by one or more of the 31 defects and women with an unaffected pregnancy are interviewed about their health, diet and lifestyle during their pregnancies. Biologic samples are also collected from each family to study genetic factors that may contribute to these birth defects.
National Down Syndrome Project
Funding Agency: National Institutes of Health
This is a population-based study to investigate genetic and environmental risk factors for Down syndrome. This study is a combined effort of the Iowa Registry and registries in five other states. Iowa women who give birth to an infant affected with Down syndrome and women with an unaffected birth are interviewed about their health, diet and lifestyle during pregnancy. Biologic samples are collected from each family to better understand genetic factors that may contribute to Down syndrome.
National Birth Defects Prevention Network
The National Birth Defects Prevention Network (NBDPN) is a nationwide association of birth defect registries, and one of its goals is to encourage scientific collaboration. Current projects are focused on such problems as preterm births, gastroschisis, and neural tube defects. The Iowa Registry for Congenital and Inherited Disorders is an active member of the NBDPN.
Birth Defects Study to Evaluate Pregnancy Exposures
Funding Agency: Centers for Disease Control and Prevention
This is a population-based study to continue investigations into genetic and environmental risk factors for 17 major birth defects. This study is a combined effort of the Iowa Registry and registries in seven other states. Women with a pregnancy affected by one or more of the 17 defects and women with an unaffected pregnancy are interviewed about risk factors that a woman may be able to change. Permission to request leftover newborn bloodspots collected shortly after birth is collected so that genetic factors that may contribute to these birth defects may be studied.
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