Care Coordination Exemplary Practices Report

April 20, 2016

Coordinating Care for Children with Genetic Disorders: Sharing Exemplary Practices from Primary Care and Specialty Care Providers report is now available! Please share the report (linked above) with your networks. The report is hosted on the NCC Care Coordination Workgroup Products page (here). On the landing page is the report itself as well as the abstract. If you have specific criteria to share the report with your network, please contact Megan Lyon (

Twenty-four programs were nominated for providing exemplary care in coordinating services for children with heritable disorders. Individuals representing the programs participated in qualitative telephone interviews. The nominees represented a variety of primary care and specialty practices and community-centered programs. Key themes and strategies emerged from the interviews, several of which crossed settings – details are offered herein. Providing coordinated care is rewarding for the clinic staff and deemed valuable by patients and families, but it is time-consuming and not adequately reimbursed by third-party payers. Developing and maintaining committed staff and financial support are ongoing challenges for the programs interviewed.

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