According to the SB Association, 70,000 people in the US are currently living with SB, making it the most common permanently disabling birth defect. The care of persons with SB is complex, involving different organ systems and, correspondingly, different clinical specialists. It is estimated that approximately 50% of those affected by SB receive specialty care in one of the estimated 150 SB multidisciplinary clinics in the US. Many of these clinics care for patients only until the age of 21 years;therefore, some persons with SB do not have the opportunity to seek care in a SB clinic. In 2008 under FOA-DD08-001 - NSBPR Demonstration Project, eight SB clinics (including The Children's Hospital of Denver) were competitively funded to test the feasibility of using a standardized data collection tool to collect and aggregate data on SB patients in the clinic setting. The analysis of these longitudinal data may be used to establish standards of care which can be implemented to improve outcomes for patients with SB in similar fashion to what has been done using the Cystic Fibrosis Registry. During this second award cycle participation in the continuation of this project by the SB Registry of Colorado and the other currently operational sites will advance our understanding of the influence of population characteristics, clinical interventions, and other factors on outcomes for patients seen in SB clinics. The longitudinal data collected will include documentation and measurement of interventions that will help establish national standards of care for patients with SB. Continued collection of these data will help determine how clinics are meeting these standards. It is also anticipated that evaluation of the data will identify areas for future research whose findings will inform best clinical practices.
The objective of the Spina Bifida Registry of Colorado is to continue with the collection of data started under FOA DD08-001 aimed at improving the care of individuals with spina bifida in the U.S. to establish the feasibility of longitudinal data collection in the clinic setting. The specific outcomes of this project are to collect longitudinal data on patients seen in spina bifida clinics to: 1. Describe the characteristics of the study population, its comparability to all SB patients in the clinic, and persons with SB generally; 2. Use data to establish the association between outcomes, interventions;demographic variables, and other factors; 3. Identify best practices; 4. Establish measures of quality care; 5. Compare outcomes among participating clinics by participating in a Coordinating Committee (CC);and 6. Serve as a source of information for future research or projects.
