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.