RFA-DD-19-001: Component A Development and Implementation of the Spina Bifida Collaborative Care Network Project Summary Individuals affected by Spina Bifida (SB) can expect to live full lives both in terms of quality and duration. The Spina Bifida Association (SBA) aims to provide health care professionals, individuals with SB, and their families and caregivers the resources needed to support them to make informed decisions about interventions and practices that yield the best outcomes in the many areas of health and living affected by SB. Prior to the initiation of the National Spina Bifida Patient Registry (NSBPR) and the Spina Bifida Collaborative Care Network (SBCCN), there was limited communication among SB health care professionals, SB clinics, and SB Chapters in the U.S. The NSBPR and the SBCCN now connect SB clinics, health care professionals, and SB chapters throughout the US, so that, through collaboration and the sharing of information, the quality of life for people with SB is maximized. Activities in the proposal titled “The Continued Development and Implementation of the Spina Bifida Collaborative Care Network”, in response to CDC “Research Approaches to Improve the Care and Outcomes for People Living with Spina Bifida” (RFA-DD-19- 001), will use clinical outcomes data from the NSBPR to identify SB clinic practices and processes that are associated with the best outcomes for people living with SB; and will communicate and encourage adoption of these practices and processes by all SB clinics. Additionally, the SBCCN will actively bridge the gap between SB research and practice by: • enhancing and expanding communication to health care professionals practicing in and out of SB clinics to promote the adoption of best practices, such as the “Guidelines for the Care of People with SB”; • identifying, communicating and supporting the exploration of research gaps/priorities by collecting and providing NSBPR researchers with information about SB patient and clinician research priorities and research gaps—and supporting exploration efforts when gaps are identified; and • determining and promoting attributes of NSBPR clinics that are associated with the best patient outcomes. Educational/informational resources for the individual with SB and provider communities, health care professionals, families, and educators will be developed, marketed, and provided as new research/information becomes available. Multiple communication channels will be employed to share all new developments.