6. Develop methods to assess the Low Must develop data public health burden of because first genetic/familial disease in the population. 6.a. Design pilot studies to examine further develop KDHE contracts out mortality related to specific genetic statewide genetics to qualified conditions and assess the costs of infrastructure, data. programs medical care for selected genetic conditions and related disorders. Data must be available before pilot studies can be implemented 6.b. Examine issues related to Identify barriers for Resources may KDHE transition from pediatric to children aging out in also include health care systems for young adults regard to access KU Life Span KGAC with developmental disabilities, multispecialty, Institute heritable disorders and birth defects interdisciplinary care and (Beach and address barriers to continuity of services for genetic Center) care for this population. disorders (e.g., KSDE geography, personnel, Disability cost, space and groups transportation). Individuals and families
6. Develop methods to assess the public health burden of genetic/familial disease in the population. Low because Must develop data first 6.a. Design pilot studies to examine mortality related to specific genetic conditions and assess the costs of medical care for selected genetic conditions and related disorders. further develop statewide genetics infrastructure, data. KDHE contracts out to qualified programs Data must be available before pilot studies can be implemented 6.b. Examine issues related to transition from pediatric to health care systems for young adults with developmental disabilities, heritable disorders and birth defects and address barriers to continuity of care for this population. Identify barriers for children aging out in regard to access multispecialty, interdisciplinary care and services for genetic disorders (e.g., geography, personnel, cost, space and transportation). Resources may also include KU Life Span Institute (Beach Center) KSDE Disability groups Individuals and families KDHE KGAC