National Spina Bifida Patient Registry

Improving the Treatment and Care for Individuals with the Nation’s Most-Common, Permanently Disabling Birth Defect

Issue Brief
The Spina Bifida Association (SBA) calls upon Congress to support efforts to help to improve the treatment and care provided to individuals with Spina Bifida – the nation’s most common, permanently disabling birth defect.

Every day an estimated eight babies are born with Spina Bifida – the nation’s most common, permanently disabling birth defect — which adversely impacts virtually every organ system. Each year 1,500 new babies with Spina Bifida join the ranks of the more than 70,000 individuals already living with Spina Bifida in needing on-going comprehensive, quality medical and psychosocial care. To help ensure that all individuals affected by Spina Bifida receive the quality, comprehensive care they need and deserve, SBA urges Congress to provide:

* $7 million to the National Spina Bifida Program in FY 2008 to support existing program initiatives and allow for the further development of the National Spina Bifida Patient Registry and a credentialing system for Spina Bifida Clinics; and

* $200,000 to the Agency for Healthcare Research and Quality (AHRQ) to support its validation of quality patient treatment data measures for the National Spina Bifida Patient Registry.

The creation and maintenance of the National Spina Bifida Patient Registry coupled with validation of quality measures will help improve the quality of care provided throughout the nation’s system of Spina Bifida Clinics.

Medical and Psychosocial Needs of Individuals with Spina Bifida
Care of persons with Spina Bifida is complex, involving different organ systems and, correspondingly, different clinical specialists. Thanks to advances in diagnostic equipment and testing and other medical breakthroughs, people with Spina Bifida are living much beyond previous generations. With this extended lifespan, individuals with Spina Bifida are facing new challenges – including unprecedented medical complications associated with aging.

A 2005 nationwide survey of Spina Bifida clinics uncovered that the current system of care serving people with Spina Bifida does not fully meet current or anticipated needs. Moreover, physicians have little evidence-based research on which to build neurological, orthopedic or urologic treatment regimens. Due to this paucity of information, clinical and public health experts — including staff at the Centers for Disease Control and Prevention (CDC) and AHRQ — have determined that a National Spina Bifida Patient Registry and related initiatives must be created to support and improve the work done by Spina Bifida Clinics and other health care providers serving people with Spina Bifida across the country.

National Spina Bifida Patient Registry
A National Spina Bifida Patient Registry will help improve the quality of care, reduce morbidity and mortality from Spina Bifida, increase the efficiency, and decrease the cost of care by supporting:

* the collection of longitudinal treatment data for children, adolescents, and adults aged 21 through the life spectrum;

* the development of quality measures and Spina Bifida treatment standards of care/best practices;

* the exchange of evidence-based information between physicians across the country to advance the use of “best practices” for the conditions and secondary effects of Spina Bifida, including paralysis, neurogenic bladder and bowel, and hydrocephalus;

* the implementation of benchmarks and a systematic program to improve care in Spina Bifida clinics;

* the identification of “centers of excellence in Spina Bifida”; and

* the evaluation of both the clinical and cost-effectiveness of treatment of Spina Bifida.

Given the complexity of care for individuals with Spina Bifida, the findings from the National Spina Bifida Patient Registry could serve as a blueprint for other individuals living with similar conditions.


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Centers for Disease Control and Prevention (CDC) Launches Spina Bifida Patient Registry

Background
Since 2005, a number of organizations have worked with SBA to learn more about the care available at 135 Spina Bifida sites in the United States. We surveyed the sites and the results provided a clearer picture of these clinics.

From the results of this survey and the experience of other voluntary health organizations, the Professional Advisory Council (PAC) of SBA proposed the development of a national infrastructure that could support clinical research and apply a systematic approach to improving the quality of care for people with Spina Bifida.

The first step in establishing this infrastructure is to create a national database on Spina Bifida patients from across the country. Toward that end, the Centers for Disease Control and Prevention recently launched the National Spina Bifida Patient Registry (NSBPR) at the National Center on Birth Defects and Developmental Disabilities. Through SBA’s Congressional advocacy activities, the National Spina Bifida Patient Registry (NSBPR) has come into existence through funding from Congress.

What is the National Spina Bifida Patient Registry (NSBPR) and how does it work?

* The registry is a computerized reporting and database system used to identify current treatments related to some important clinical questions in Spina Bifida. This first step is crucial to a process that will ultimately lead to additional research and to improvements in the quality of care for people with Spina Bifida.
* Currently there are 9 institutions in the Registry.
* Based on information from the registry, treatments and outcomes can be compared at different clinics as well as across population groups and geographic regions.
* Researchers can identify areas for future research
* Clinicians can refine “best-practice” guidelines for care in SB

Which Spina Bifida Clinics are participating in the pilot?
Nine Spina Bifida clinics have received grants to pilot the Registry:
Children’s Hospital of Wisconsin
Children’s Hospital of Los Angeles
Children’s Hospital and Regional Medical Center in Seattle
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 will the clinics use the data?

* The anonymous patient data will be 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.
* Data is collected in an electronic medical record (EMR) designed based on the specific needs of Spina Bifida patients
* The Project Director or Principal Investigator at each of the 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, analyzing data, and identifying research opportunities and best practices.

The Goal
The database will eventually be applied to improve the care of people with Spina Bifida across the nation.

Article posted on Family Village: http://www.familyvillage.wisc.edu/phpbbfv/viewtopic.php?p=1402&sid=1951d28f94deab0d2d1f04b8ec4e462b