THE GOALS AND OBJECTIVES OF THE PROJECT ARE:

GOAL A: Establish and maintain the infrastructure needed to support the Western States Regional Genetic Services Collaborative activities.

  • Objective 1: Facilitate collaborative efforts among the region's genetic specialists, families, primary care providers, state genetic programs, state newborn screening programs, CSHCN programs, and others to complete the collaborative's activities.

GOAL B: Maintain and expand development, piloting, and evaluation of a regional Practice Model that improves access to specialty genetic services, comprehensive primary care, and care coordination for children with heritable conditions living far away from comprehensive genetics and metabolic centers.

  • Objective 2: Improve access to specialty metabolic genetic services for children with suspected or confirmed metabolic conditions

  • Objective 3:Improve access to clinical genetic specialty services for children with suspected or confirmed genetic conditions and congenital malformations.

  • Objective 4: Improve access to comprehensive primary care for children with heritable conditions.

  • Objective 5: Improve care coordination services for children with heritable conditions.

GOAL C: Increase the capacity of the collaborating states' and territory's public health agencies to perform their genetics-related assessment, policy development, and assurance functions.

  • Objective 6: Develop strategies to measure health outcomes for children with heritable conditions and use the results to evaluate the practice model.

  • Objective 7: Develop tools to evaluate access to genetic services for families living at a distance from comprehensive genetic and metabolic centers and use the results to evaluate the practice model.

  • Objective 8: Promote third party reimbursement of in-person, telemedicine, and telephone genetic services.

  • Objective 9: Assist the Alaska state genetics and newborn screening programs to implement activities that improve medical management and care coordination needs for children diagnosed with heritable conditions.

  • Objective 10: Assist the Guam Maternal and Child Health Program to assess its genetic services and newborn screening needs and to plan improvements in their genetic services system.

  • Objective 11: Assist the Idaho and Nevada health agencies to improve newborn screening specimen collection.

  • Objective 12: Develop and pilot a strategy to educate prenatal care providers about newborn screening.