Lab Matters Spring 2017 - Page 21

newborn screening Expanding State Newborn Screening Panels in Missouri and Iowa by OluwaFunke Akinsola, associate specialist, Newborn Screening and Genetics The following resources have been developed by APHL Newborn Screening and Genetics workgroups for states to use in consideration of expanding their NBS panel: • Adding Conditions to State Newborn Screening Panels: Recommendations for Decision Makers • Fact Sheet on Creating an Effective State Review Process • NewSTEPs Webinars on Laboratory and Follow-up/ Education Considerations for Implementation of New Conditions (archived on NewSTEPs.org>News and Education>Webinars) The standing committees meet at least once a year and make recommendations to the Genetic Advisory Committee regarding emerging issues and the direction of the NBS program. W ith the help of new screening technologies, state newborn screening (NBS) programs have the potential to expand their screening panels to include newly added disorders to the Recommended Uniform Screening Panel (RUSP), a list of conditions recommended for routine newborn screening by the US Secretary of Health and Human Services. Currently, the RUSP includes 34 core conditions and 26 secondary conditions. While some states follow the RUSP in adding new conditions to their NBS panels, other states consider the RUSP as just one component of their evaluation, engaging experts and other stakeholders in their evidence review prior to adding new disorders. Below are perspectives from Missouri and Iowa on their procedures to expand their NBS panels and the role of advisory committees in their decision- making process. Missouri State Public Health Laboratory The process to add conditions to NBS panels may vary from state to state, but generally, states will pursue an evaluative course of action to assess the value and feasibility of adding a condition to their panels. Newborn screening advisory committees play a key role in facilitating this process in most states. A total of 46 NBS programs have a state advisory committee to inform NBS decisions and 74% of these committees meet at least twice a year. The use of an advisory committee is valuable in convening relevant stakeholders to assess data, engage in dialogue and present a variety of perspectives. Committee members bring their expertise and experience to increase understanding of the subject matter, develop effective public action and build better relationships as they work toward common goals. The importance of public participation in decision- making processes cannot be underestimated. PublicHealthLabs @APHL As the first state in the country to implement population-wide screening for several lysosomal storage disorders (Pompe disease, Fabry disease, Gaucher disease and mucopolysaccharidosis type I (MPS-I)) in January 2013, Missouri continues to lead the US in screening for additional new disorders. Under MO House Bill 66, the state will expand its newborn screening requirements to include spinal muscular atrophy (SMA) and Hunter syndrome (MPS-II) by January 1, 2019. Currently, House Bill 66 has been voted as “do pass” by both the House and Senate committees, which puts it one step closer to becoming law. To guide the Missouri NBS program in identifying conditions for its NBS panel, the Missouri Genetic Advisory Committee, a governor-appointed advisory board, convenes at least once a year. Committee members are geneticists, specialty medical care providers, parents of affected children, primary medical care providers, genetic counselors, public health professionals and other stakeholders involved in the identification and care of infants with screened genetic conditions. The Advisory Committee consists of five standing committees, each focusing on a specific health issue: Newborn Screening, Newborn Hearing, Cystic Fibrosis, Sickle Cell Anemia and Hemophilia. APHL.org Iowa Department of Public Health Iowa’s Congenital and Inherited Disorder Advisory Committee (CIDAC) advises the director of the Iowa Department of Public He alth on issues related to genetics, hereditary and congenital conditions. CIDAC also makes recommendations on the design and implementation of genetic programs within the state. Committee members range from physicians, nurses, legislators, parents, consumers and educators to representatives from community-based organizations. CIDAC convenes quarterly and receives input from subcommittees on managing the NBS panel, informed consent and residual NBS specimens. CIDAC reviews nominations for new conditions to be added to the state panel. Nominations must detail the rationale for adding the condition, including the nature of the condition, the net benefit of screening, the technical feasibility of screening and the current screening status of the condition in other states. CIDAC utilizes the classic Wilson and Jungner screening criteria, and evaluates the potential impact of integrating the test into existing NBS protocols, programs, systems and public health department. The State Board of Health gives final approval to conditions recommended by CIDAC. A Unique Process Across States In conclusion, the process of adding conditions varies across states. Each state adopts a unique process for expanding its NBS panel. The examples discussed reflect the vital role advisory committees play in facilitating this process. Spring 2017 LAB MATTERS 19