.) There are an estimated 70,000 people in the United States currently living with Spina Bifida, which is the most common permanently disabling birth defect in this country. Spina Bifida is a neural tube defect that happens in the first month of pregnancy when the spinal column doesn't close completely. Thanks to new medical treatments and technology, most people born with Spina Bifida can expect to live a normal life expectancy. Those with this challenging birth defect are living longer, more productive lives than was dreamed of just 20 years ago. People with Spina Bifida face special challenges because of this birth defect. Spina Bifida occurs in an estimated 7 out of every 10,000 live births in the United States and although this number seems to be going down in the rest of the country that is not necessarily true in Alabama. Children born with Spina Bifida face a number of obstacles including hydrocephalus in more that 90% of cases, as well as paralysis and weakness of the extremities and decreased bladder/bowel control. Phase I of the project was highly successful. The Spina Bifida Association of America funded The Children's Hospital of Alabama (TCHA) and The Children's Hospital of Cincinnati to develop a diagnosis specific electronic medical record (EMR) for Spina Bifida clinics nation wide. The registry questions were embedded into to an electronic medical record (EMR) and will be used by the enrolled sites to electronically submit the required data. The Phase II specific aims are to enroll each Spina Bifida patient seen in the multi- disciplinary clinic willing to consent with no less than a minimum of 125 new patients annually. The data will be de-identified and submitted electronically to the Centers for Disease Control and Prevention (CDC) in their pre-designed format. Each site will also be able to conduct their own research based on the information entered on their own patients provided all institutional approvals are in place for the protection of human subject research. The University of Alabama at Birmingham (UAB) intends to submit a full proposal in response to funding opportunity number RFA-DD-08-001, which will be titled The UAB Spina Bifida Patient Registry Demonstration Project. We feel strongly that we should be selected as one of the eight sites participating in this study based on our level of expertise, the significant volume of clinical care given, and the large and diverse patient population served in Alabama. In September 2007, the Children's Hospital of Alabama along with the Children's Hospital Cincinnati were chosen by the Spina Bifida Association of America (SBAA) to develop a spina bifida specific electronic medical record (EMR) that would be used in clinics nationwide to track patients living with spina bifida as well as raise the level of care that these patients receive. This selection was based in part on the fact that Betsy DeCesare, the Spina Bifida Clinic Coordinator at the Children's Hospital of Alabama (TCHA) was instrumental in a similar national data base project related to hemophilia at Children's Healthcare of Atlanta. This EMR will be the instrument used to submit de-identified data to the Center for Disease Control's (CDC) registry project. Therefore, our clinic is most prepared and equipped to participate with the other selected sites over the next three years in an effort to improve the quality of care for individuals with spina bifida, and create an infrastructure to support evidence based clinical research. UAB is also home to many passionate national leaders in spina bifida. Dr. Jeffery Blount a neurosurgeon is currently the Chair of the Spina Bifida Association Professional Advisory Council (PAC). Dr. David Joseph a urologist, is chair of the research committee of the SBAA and on the Board of Directors for the Spina Bifida Foundation and their liaison to the PAC. Both physician leaders are on the UAB multi- disciplinary spina bifida team. Over the next three years, The Children's Hospital of Alabama Spina Bifida Clinic intends to enroll each consented patient into this study to maximize research potential. As well as work with the other selected sites to put the infrastructure in place to develop a national registry for spina bifida.
The University of Alabama at Birmingham (UAB) intends to submit a full proposal in response to funding opportunity number RFA-DD-08-001, which will be titled The UAB Spina Bifida Patient Registry Demonstration Project. We feel strongly that we should be selected as one of the eight sites participating in this study based on our level of expertise, the significant volume of clinical care given, and the large and diverse patient population served in Alabama. In September 2007, the Children's Hospital of Alabama along with the Children's Hospital Cincinnati were chosen by the Spina Bifida Association of America (SBAA) to develop a spina bifida specific electronic medical record (EMR) that would be used in clinics nationwide to track patients living with spina bifida as well as raise the level of care that these patients receive. This selection was based in part on the fact that Betsy DeCesare, the Spina Bifida Clinic Coordinator at the Children's Hospital of Alabama (TCHA) was instrumental in a similar national data base project related to hemophilia at Children's Healthcare of Atlanta. This EMR will be the instrument used to submit de-identified data to the Center for Disease Control's (CDC) registry project. Therefore, our clinic is most prepared and equipped to participate with the other selected sites over the next three years in an effort to improve the quality of care for individuals with spina bifida, and create an infrastructure to support evidence based clinical research. UAB is also home to many passionate national leaders in spina bifida. Dr. Jeffery Blount a neurosurgeon, is currently the Chair of the Spina Bifida Association Professional Advisory Council (PAC). Dr. David Joseph a urologist, is chair of the research committee of the SBAA and on the Board of Directors for the Spina Bifida Foundation and their liaison to the PAC. Both physician leaders are on the UAB multi- disciplinary spina bifida team. Over the next three years, The Children's Hospital of Alabama Spina Bifida Clinic intends to enroll each consented patient into this study to maximize research potential. As well as work with the other selected sites to put the infrastructure in place to develop a national registry for spina bifida.
