The UAB Spina Bifida Registry Longitudinal Data Collection and Evaluation Study

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Project Summary 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 funding opportunity FOA DD08-001creating a 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. The structure for the registry project can be classified into three major phases. During phase I of the project, 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 which were embedded into to the EMR. Phase II of this project which was funded under FOA DD08-001; consisting of 9 sites which were selected to submit data on a minimum of 125 patients for three years totaling 375 individual annual record forms. As of February 15, 2011, UAB has collected data on 280 patients in the pediatric setting with > 400 annual reports. In addition to collecting data on our pediatric patients we are now collecting data on our adult population. In October 2010, we began staffing an adult Spina Bifida clinic and to date, we have collected data on 14 adult patients. UAB is committed to the next phase of this project, FOA RFA-DD-11-005, which is to continue to collect data on the patient population started in funding opportunity FOA DD08-001. This continuation will allow longitudinal data collection on patients that have currently been tracked for the past three years as well as to continue to add new patients into the registry. Through adding to the longitudinal data, we will be able to contribute to developing outcomes, best practices, and clinical interventions for the Spina Bifida patient population.