Treating and Caring 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 strengthen the nation’s system of Spina Bifida Clinics.  Specifically, SBA urges Congress to allocate $200,000 to the Agency for Healthcare Research and Quality (AHRQ) to support the continuation and expansion of the development of a National Spina Bifida Patient Registry.  SBA requests that the AHRQ be directed to lead the effort to validate quality patient treatment data measures for the National Spina Bifida Patient Registry, which will help improve the quality of care provided throughout the nation’s system of Spina Bifida Clinics.

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.

Background on Spina Bifida Clinics
Currently, 121 (see attached roster for a full state-by-state listing) Spina Bifida Clinics across the country serve children and adults, whose daily health and well-being are challenged by this complicated birth defect.  Spina Bifida Clinics work with affected children, individuals, and their families to identify and implement valuable therapies and interventions tailored for each person living with Spina Bifida.  Spina Bifida Clinics provide:

• Comprehensive care in myriad medical specialties areas of need, such as neurology, neurosurgery, urology, orthopedics, gastroenterology, as well as psychosocial services;
  
  
• A convenient, patient-centered setting in which patients rotate through subsequent visits with specialty clinicians – in a single day, as opposed to having to visit individual specialty physicians in each of their different offices on multiple days;
  
  
• A central location in which specialty clinicians can consult with one another throughout a patient visit, ensuring coordination of care for these vulnerable patients; and
  
  
• A nurse administrator who serves as the conduit of information between those providing clinical services and the patient and family members.
  
  

The majority of Spina Bifida clinics only serve children, leaving those who have survived into adulthood to struggle with the search to find a health care provider able to treat the incredible complexities of their conditions.  Information gleaned from the creation of a National Spina Bifida Patient Registry and the validation of quality patient treatment data measures will help inform the provision of quality care to individuals with Spina Bifida across the life-spectrum and strengthen the care offered through the nation’s system of Spina Bifida clinics.