Wendy Burdo- Hartman, MD

Grand Rapids, MI

Planning for Transition: Pediatrics to Adult Medicine

Purpose: To evaluate the needs of West Micigan medical systems to transition CYSHCN from pediatrics to adult medicine.

Activities: A Transition Task Force has been formed to develop surveys and conduct focus groups to: 1) assess patient, family and primary and subspecialists concerns on faciliating the transition process; and 2) develop a plan for medical care in the adult medical system.

Outcome: N/A

Galen Chock, MD

Honolul, HI

RSV Prophylaxis Registry for Hawaii

Purpose: Plan for the establishment of a permanent, funded RSV Prophylaxis Registry that will track approximately 300 high risk infants and toddlers annually.

Activities: Through Key Community Partner Coalition Meetings, the planning process will consist of: 1) the identification of the appropriate community partners, 2) facilitate a dialogue and create a commitment to a system of prophylaxis, 3) define the role and responsibilities of the medical home, 4) create the specification for the registry, 5) identify technical, operation and reporting requirements for the registry, and 6) develop a proposal to obtain funding by September 2006.

Outcome: N/A

Lakshmy Rajagopalan, MD, JD

Cypress, TX

EHDI for ALL Infants

Purpose: To assess reasons to why infants may not receive follow-up care for EHDI and to identify solutions to those barriers.

Activities: 1) Form a coalition of audiologists, medical home providers, parents of infants with hearing loss, and state/AAP EHDI coordinators to specifically identify barriers to provision of services for all infants and to identify and discuss possible solutions. 2) Develop a survey for medical home providers to assess their knowledge of the EHDI program and the need for education regarding the program. 3) Interview/survey various medical providers to explore/assess comunication channels regardingg follow-up for hearing loss, and 4) write grant proposals to secure funding for the implementation phase of the project.

Outcome: N/A

Nicole Tartaglia, MD

Sacramento, CA

Comprehensive Care for X-tra Special Children

Purpose: To develop a model of ocmprehensive health care for patients with Sex Chromosome Aneuploidy (SCA) that will address their medical, developmental, and behavioral health needs.

Activities: Through an initial collaboration meeting with physicians, community collaborators and parents, a multidisciplinary team will be formed. Aneeds assessment of the SCA population will be conducted; and a plan for a comprehensive model of care developed for SCA children and adolescents with realistic plans for implementation of the model.

Outcome: N/A