Voting on issues requiring a vote Optimum membership consists of at least Providing to KDHE nominations of one representative from each of the candidates to fill vacant member following categories: positions pediatric specialist relevant to each disorder screened (e.g., pediatric Sub-committees are utilized by the KACNS hematologist for hemoglobinopathies as deemed appropriate by the Council. pediatric metabolic specialist for committees include: Education, metabolic diseases such as PKU, MCAD, Parent/Advocacy, Program Administration, biotinidase deficiency and galactosemia, Hemoglobinopathies, Endocrine Conditions, a pediatric endocrinologist for diseases Cystic Fibrosis, Metabolic Conditions, and such as congenital primary Evaluation. New subcommittees are added hypothyroidism) as needed. pediatrician practicing in a Kansas community Metabolic Formula Program family physician practicing in a Kansas Metabolic formula and treatment products community are provided to some Kansas residents neonatologist through the Children and Youth with Special pathologist Health Care Needs (CYSHCN) Program (4). laboratory Ph.D. or above chemist The program is funded with state and hospital representative federal MCH funds. Each application is nutritionist practicing at a Kansas individually reviewed, and medical and metabolic clinic financial eligibility is determined according geneticist to established guidelines. The guidelines nurse practitioner practicing at a Kansas assure that Kansas residents of any age who have a condition identified through the metabolic clinic parent or consumer representatives newborn screening program are covered as bioethicist of 7/1/08 when they meet the financial guidelines (subject to funding availability). others as the Council determines necessary Sound Beginnings The Council members are responsible for: Kansas legislation authorized mandatory Providing input on ideas and newborn hearing screening in 1999. The participating in discussions goal is to identify congenital hearing loss in Reviewing and commenting on children before three months of age with research, reports and other background appropriate intervention no later than six information months of age. Statistics show that three Attending quarterly meetings newborns per 1,000 have some degree of Recommending strategies for program permanent hearing loss. Congenital hearing improvement loss is more common than cleft lip or Down
Optimum membership consists of at least one representative from each of the following categories: pediatric specialist relevant to each disorder screened (e.g., pediatric hematologist for hemoglobinopathies pediatric metabolic specialist for metabolic diseases such as PKU, MCAD, biotinidase deficiency and galactosemia, a pediatric endocrinologist for diseases such as congenital primary hypothyroidism) pediatrician practicing in a Kansas community family physician practicing in a Kansas community neonatologist pathologist laboratory Ph.D. or above chemist hospital representative nutritionist practicing at a Kansas metabolic clinic geneticist nurse practitioner practicing at a Kansas metabolic clinic parent or consumer representatives bioethicist others as the Council determines necessary The Council members are responsible for: Providing input on ideas and participating in discussions Reviewing and commenting on research, reports and other background information Attending quarterly meetings Recommending strategies for program improvement Voting on issues requiring a vote Providing to KDHE nominations of candidates to fill vacant member positions Sub-committees are utilized by the KACNS as deemed appropriate by the Council. include: Education, Parent/Advocacy, Program Administration, Hemoglobinopathies, Endocrine Conditions, Cystic Fibrosis, Metabolic Conditions, and Evaluation. New subcommittees are added as needed. Metabolic Formula Program Metabolic formula and treatment products are provided to some Kansas residents through the Children and Youth with Special Health Care Needs (CYSHCN) Program (4). The program is funded with state and federal MCH funds. Each application is individually reviewed, and medical and financial eligibility is determined according to established guidelines. The guidelines assure that Kansas residents of any age who have a condition identified through the newborn screening program are covered as of 7/1/08 when they meet the financial guidelines (subject to funding availability). Sound Beginnings Kansas legislation authorized mandatory newborn hearing screening in 1999. The goal is to identify congenital hearing loss in children before three months of age with appropriate intervention no later than six months of age. Statistics show that three newborns per 1,000 have some degree of permanent hearing loss. Congenital hearing loss is more common than cleft lip or Down committees
2010%20State%20Genetics%20Plan%20Update2.docx