eInsights - August 2010
Update on the National Spina Bifida Patient Registry
The National Spina Bifida Patient Registry (NSBPR) was formulated with the purposes of improving the care delivered in Spina Bifida clinics and developing a foundation for future research. The registry is a computerized reporting and database system used to identify current treatments related to some important clinical questions in Spina Bifida using anonymous patient data.
Currently, there are nine institutions participating in the NSBPR. Based on information from the registry, treatments and outcomes for patients with Spina Bifida can be compared at different clinics as well as across population groups and geographic regions. Researchers can identify areas for future research, and clinicians can refine “best-practice” guidelines for care in Spina Bifida. In addition, the NSBPR has proved to be a great way for patients to feel that they can help.
Participating patients at The Children’s Hospital of Alabama show such enthusiasm to be part of a process that lays the groundwork for individuals with Spina Bifida today and in the future. Betsy DeCesare Hopson, Spina Bifida Coordinator at The Children's Hospital of Alabama, said “Most of our participants are eager to be part of an evolving process. They go above and beyond to give us what we need knowing that in the long run a more comprehensive system will be available to Spina Bifida patients.”
How do the clinics use the data?
- Anonymous patient data is gathered into a central database developed by the Centers for Disease Control and Prevention (CDC).
- Each clinic will submit data on at least 125 Spina Bifida patients each year for three years. It is expected that data will be collected on the same patients each year.
- Data is collected in an electronic medical record (EMR) that has been designed based on the specific needs of Spina Bifida patients
- A Project Director or Principal Investigator at each of the nine pilot institutions serves on a committee along with representatives from CDC, SBA, and the Agency for Healthcare Research and Quality.
- This committee will oversee the project, analyze data, and identify research opportunities and best practices.
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National Spina Bifida Patient Registry (NSBPR) Facts
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The NSBPR identifies measures that will aid in the development of standards of care for people with Spina Bifida and facilitates progress to establish and measure the implementation of those standards.
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The CDC has developed an Electronic Medical Record (EMR) system that is specifically designed for the care of persons affected by Spina Bifida and facilitates the capture of anonymous data meaningful in the care of patients with Spina Bifida.
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Participating Clinics can use the EMR to manage their own clinic data and to submit the required data to the registry, or they may submit data independent of full use of the EMR. Questions covering demographic information such as geographic location and ethnic background, as well as medical information such as conditions and treatments have been formulated.
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The NSBPR provides a reliable means to compare treatment and outcomes among clinics, population groups, and geographic areas.
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The National Spina Bifida Patient Registry (NSBPR) was launched in 2008 under the umbrella of the National Spina Bifida Program (NSBP). Created by an act of Congress in 2003, the NSBP is housed at the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention (CDC) in Atlanta and operates in partnership with Spina Bifida Association (SBA).
Which Spina Bifida Clinics are participating?
Nine Spina Bifida clinics have received grants to pilot the Registry:
- Children’s Hospital and Regional Medical Center in Seattle
- Children’s Hospital of Los Angeles
- Children’s Hospital of Wisconsin
- Cincinnati Children’s Hospital Medical Center
- Connecticut Children’s Medical Center
- Indiana University/Riley Hospital for Children
- Oregon Health and Science University
- University of Alabama at Birmingham
- University of Colorado, Denver
How does a clinic get selected to be part of the NSBPR?
In order to be selected as part of the NSBPR, clinics have to apply through a request for application process. The RFA is released by the CDC.
How can your clinic be involved?
Encourage your clinic to contact the National Spina Bifida Program at the CDC to learn more.
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