.) Spina Bifida (SB) is one of the most common causes of disability among children and adults. Approximately 1,400 people are living with SB in Wisconsin. Health care for persons with SB is complex and involves multiple physical, learning, and psychosocial issues. Yet little comprehensive data is available regarding clinical care in SB. The overall goal of this project is to test the feasibility of utilizing a national standardized registry tool to collect data on patients with SB in the Spina Bifida Program at Children's Hospital of Wisconsin (CHW).
The specific aims of this project are to:
Specific Aim 1 : To recruit and consent 125-175 SB Program patients annually to participate in the national SB patient registry.
Specific Aim 2 : To capture patient data for annual clinical encounters at the Spina Bifida Clinic at CHW in an efficient manner and transmit to a central data repository.
Specific Aim 3 : To provide representation on the CDC Coordinating Committee to contribute to the overall direction of the national project and identify research opportunities. This 3-year longitudinal descriptive study will be carried out under the leadership of study Principal Investigator (PI) Kathleen Sawin, DNS, CPNP, FAAN in collaboration with the Medical Director of the SB Program, John Thometz, MD. Specifically, this project will determine the feasibly of consenting 125-175 families in the SB Program at CHW, capturing the registry data on annual clinical encounters in an efficient manner, and uploading data to the CDC site. The PI, medical director and research nurse will work with SB Program providers to orient them to the required components and study definitions. The data will be extracted at annual visits from existing medical records. Data elements collected will include participant demographics, medical and surgical history, and select measurements. In addition, specific data will be reported for any deaths. All data uploaded to this registry will be de-identified and a unique CDC number will be used to submit data in year 2 and 3 that can be linked to year 1. Guidance for data analysis as well as overall project direction will be provided by CDC Coordinating Committee The Feasibility of Implementing a National Spina Bifida Registry in Wisconsin Project Narrative The establishment of a national Spina Bifida registry that will capture critical clinical information for children, adults and families with spina bifida will result in several important outcomes. The national registry will lead to improved quality of care for patients with spina bifida and their families and identification of areas for future research. Children's Hospital of Wisconsin's contribution to this registry will add valuable content and participate in overall direction to the project.
The Feasibility of Implementing a National Spina Bifida Registry in Wisconsin Project Narrative The establishment of a national Spina Bifida registry that will capture critical clinical information for children, adults and families with spina bifida will result in several important outcomes. The national registry will lead to improved quality of care for patients with spina bifida and their families and identification of areas for future research. Children's Hospital of Wisconsin's contribution to this registry will add valuable content and participate in overall direction to the project. PHS 398/2590 (Rev. 11/07) Page 1
