This is an application in response to Component B of the FOA RFA-DD-19-001: Research Approaches to Improve the Care and Outcomes of People Living with Spina Bifida. Gillette Children?s Specialty Healthcare (Gillette) is a hospital and clinic system that provides care for children and adults with chronic disease with onset in childhood. All aspects of both acute and chronic care for these disorders is provided within this entity, which has been providing such care for over a century. A number of distinct programs exist at Gillette, with a particular emphasis on neuroscience disorders. The spina bifida (SB) program has a long history at Gillette, and all specialties necessary for the care of these patients are available in our program, both for the care of children and adults. These include pediatric and adult providers in physical medicine and rehabilitation, orthopaedics, urology and neurosurgery. We also have all forms of therapy available, with appropriate support staff. Other services are available for consultation within the community. Our physical structure includes a 60 bed hospital located in St Paul MN, with a network of specialty clinics throughout Minnesota. Our structure allows for us to see spina bifida patients in three distinct care models. The majority of patients are seen by the providers of their choosing, which reflects that we have had a large number of specialists available to care for these patients, over many years. For more than 10 years, we have had a dedicated multidisciplinary clinic for adults with SB, with all patients seen at a single event clinic. Since the Fall of 2013, we have started a similar model for pediatric patients, for those families who wish to consolidate their care to as few appointments as possible. We see in the neighborhood of 500 patients in this diagnostic group, from infants to adults. Our patients come predominately from Minnesota and nearby portions of Wisconsin, Iowa and both North and South Dakota. We propose to continue our effort to enroll new patients in the NSBPR and to conduct yearly follow-up with over 400 previously enrolled patients. Our research department is fully engaged in this process and we anticipate being able to capture a significant proportion of our patients, particularly given past success and participation in the NSBPR. We are also submitting a research proposal that uses an innovative data analytic approach to better understand the short- and long-term effects of social determinant s of health (SDH) on children?s health outcomes. Although the empirical research is growing in this area, there remains a gap in understanding SDH for children with medical complexity, which includes children with SB. Merging and analyzing data from the Gillette medical record, the NSBPR and state administrative databases containing SDH addresses the critical need to study SDH for the SB population and using this knowledge to better inform the development of targeted interventions.
More than 70,000 people in the U.S. are currently living with spina bifida (SB), making it the most common permanently disabling birth defect. Because of the low prevalence and significant complexity of SB, the National Spina Bifida Patient Registry (NSBPR) was created to improve the quality of care of people living with SB by collecting a large pool of longitudinal data on children and adults with SB. Because we treat over 500 children and adults with SB each year, and have successfully contributed to the NSBPR over the past five years, we propose that Gillette Children?s Specialty Healthcare continues to serve as one of the clinic sites in the NSBPR. Gillette will also use the registry to pursue important research questions to improve our understanding of SB and its treatment and care across the lifespan.
