According to the SB Association of America, """"""""there are an estimated 166,000 people living in the US with SB."""""""" SB occurs in an estimated 7 out of 10,000 live births in the US. Prior to 1950, many children with SB died of hydrocephalus, infections or related complications. With medical progress, it has been possible for most children to survive and lead productive lives. As the children become adults, we are faced with new concerns in addition to the known medical obstacles of hydrocephalus, lower extremity paralysis and bowel and bladder incontinence. The cause of SB remains unknown;however, with the use of folic acid, there has been a reduction in the number of newborns with myelomeningocele. At Children's Memorial Hospital SB Center, we have seen a decline in the number of newborns referred for immediate closure;however, this decline is misleading since we have continued to get referrals of newborns after their primary closure at outlying hospitals. Types of SB followed in our SB clinic include: myelomeningocele, lipomyelomeningocele, meningocele, myelocystocele, tethered spinal cord syndrome, and fatty filum. This study aims to enroll every patient with a diagnosis of SB who is evaluated and followed by the multi-disciplinary team at the Children's Memorial Hospital SB Clinic to take part in the National Registry. After consent is obtained, data will be collected, de-identified and submitted electronically to the CDC utilizing their pre-designed electronic format. We will also be able to conduct research based on the information entered on our own patients, with appropriate institutional approval for the protection of human subject research.
This national registry will allow us to collect longitudinal treatment data for patients with spina bifida and identify treatment outcomes, assess new problems, evaluate current protocols and revise them as needed. The registry will allow us to compare and contrast our subgroup of patients with those treated elsewhere and make decisions to improve quality of care.
|Sawin, Kathleen J; Liu, Tiebin; Ward, Elisabeth et al. (2015) The National Spina Bifida Patient Registry: profile of a large cohort of participants from the first 10 clinics. J Pediatr 166:444-50.e1|
|Kim, Sunkyung; Ward, Elisabeth; Dicianno, Brad E et al. (2015) Factors associated with pressure ulcers in individuals with spina bifida. Arch Phys Med Rehabil 96:1435-1441.e1|
|Schechter, Michael S; Liu, Tiebin; Soe, Minn et al. (2015) Sociodemographic attributes and spina bifida outcomes. Pediatrics 135:e957-64|
|Thibadeau, Judy K; Ward, Elisabeth A; Soe, Minn M et al. (2013) Testing the feasibility of a National Spina Bifida Patient Registry. Birth Defects Res A Clin Mol Teratol 97:36-41|