Iowa, North and South Dakota NBS Update

The Iowa Department of Public Health works with the University Hygienic Laboratory and the University of Iowa Department of Pediatrics, Division of Medical Genetics, to provide newborn dried blood spot screening and follow-up services for all Iowa newborns. The Iowa Neonatal Metabolic Screening Program (INMSP) screens for all disorders recommended by the American College of Medical Genetics and the March of Dimes, including newborn hearing screening, and cystic fibrosis testing.  The Iowa University Hygienic Laboratory also provides newborn screening laboratory testing for South and North Dakota, as well as initial notification of abnormal results. Iowa is collaborating with North Dakota and South Dakota to standardize newborn screening procedures and policies.  A new collaborative arrangement has Barbara Schweitzer, from North Dakota, working as the Newborn Screening Coordinator for both Iowa and North Dakota.

South Dakota contracted with the University of Iowa Hygienic Laboratory  beginning June 1, 2007 for newborn screening laboratory services; Cystic Fibrosis screening was mandated at that time.  Efforts are currently underway toward developing a long tern follow up component to the SD Newborn Screening Program.

The INMSP Executive Team (the medical director, laboratory director, state genetics coordinator and administrator) researches and explores potential additional disorders for the screening panel and at the present time is looking into screening for Severe Combined Immuno Deficiency (SCID) and Congenital Cytomegalovirus (CMV).

The Iowa Department of Public Health also has a HRSA MCHB grant to increase family participation in the planning, implementation, and evaluation of Iowa newborn screening programs. Program staff is meeting with representatives from different communicates that haven't historically participated in newborn screening programs, such as Sudanese immigrants, adoptive parents, Amish, Native American Indians, and also with parents of children with a positive screen. The aim is to understand their perceptions of newborn screening programs, and to invite their involvement at a program level.

The Iowa state genetics coordinator will be undertaking a cost-benefit analysis of newborn screening and follow-up, including benefits of treatments such as metabolic formula and medical foods.