The University of Alabama at Birmingham (UAB) has been committed to the National Spina Bifida Patient Registry since its inception. The CDC recognized the need and benefits of a registry to promote advances in all areas of health care for individuals with Spina Bifida and established the National Spina Bifida Patient Registry. The goal of this initiative was to improve the quality of healthcare as well as to gain an understanding of the demographics and characteristics of individuals with Spina Bifida. Beginning in 2008, The Children's Hospital of Alabama with The University of Alabama at Birmingham (UAB) and The Children's Hospital of Cincinnati collaborated with programmers from Ground Zero Software to develop a diagnosis specific electronic medical record (EMR) for Spina Bifida called Webtracker. Webtracker was designed to function as a Spina Bifida EMR that could be used universally by clinics as well as to be the repository for data points that woul be used as the registry which were embedded into to the EMR. UAB was then funded under FOA DD08-001;which consisted of 9 sites that were selected to enroll patients into the registry. This funding cycle ended in 2011 but was met with a new funding opportunity, FOA RFA-DD-11-005 where UAB was selected to continue to collect longitudinal data on the patient population included in the registry as well as to add new patients in the clinic to the registry. As of Februay 1, 2014, UAB has collected data on 485 patients and completed 1,364 annual reports since 2009. UAB has led all registry sites in number of enrollees, number of longitudinal data reports, and the number of eligible patients being enrolled at a percentage of 99% of eligible patients being enrolled. UAB is committed to continue the collection of longitudinal data on children and adults with Spina Bifida seen in our clinics. These data will be used to promote quality of care by determining best practices through comparing differences in interventions and outcomes among participating clinics. UAB also intends to develop hypotheses in the areas of patient compliance after transition, variation of treatment amongst clinics in urological management;specifically urodynamic testing, and variation in neurosurgical management. These studies will be completed using the National Spina Bifida Patient Registry data.
The National Spina Bifida Registry Project was designed to serve as a systematic approach to track variation in treatment across clinics nationwide in an effort to improve the quality of care of individuals with spina bifida using evidence based methodology. The registry serves as a method for gathering and collecting the evidence needed to make scientific decisions about the best treatment options. The purpose of this project is to continue to update data collection on the nearly 500 patients from our institution currently enrolled in the patient registry and to enroll all eligible newborn or transfer patients. A primary focus of this project is to utilize the data points collected to develop research plans that incorporate an in-depth analysis of local data as well as an of the aggregate data from all sites to assess best practice. Through these research plans, evidence based treatment protocols can be developed and implemented nationally.
| Liu, Tiebin; Ouyang, Lijing; Thibadeau, Judy et al. (2018) Longitudinal Study of Bladder Continence in Patients with Spina Bifida in the National Spina Bifida Patient Registry. J Urol 199:837-843 |
