National Spina Bifida Registry - Children's Memorial Hospital Spina Bifida Clinic

描述（由申请人提供）：根据美国SB协会，“估计有166，000人生活在美国与SB。“据估计，在美国，每10,000名活产婴儿中就有7名发生SB。在1950年之前，许多SB儿童死于脑积水，感染或相关并发症。随着医学的进步，大多数儿童都有可能存活下来，过上有意义的生活。随着儿童长大成人，我们面临着新的问题，除了已知的医疗障碍，脑积水，下肢瘫痪和肠和膀胱失禁。SB的原因尚不清楚;然而，随着叶酸的使用，患有脊髓脊膜膨出的新生儿数量有所减少。在儿童纪念医院SB中心，我们看到转诊立即关闭的新生儿数量下降;然而，这种下降是误导性的，因为我们继续在外围医院初步关闭后转诊新生儿。在我们的SB诊所随访的SB类型包括：脊髓脊膜膨出、脂肪脊髓脊膜膨出、脊膜膨出、脊髓囊膨出、脊髓栓系综合征和脂肪丝。这项研究的目的是招募每一个诊断为SB的患者，他们在儿童纪念医院SB诊所接受多学科团队的评估和随访，参加国家登记。获得知情同意后，将收集数据，去识别并使用预先设计的电子格式以电子方式提交给CDC。我们还将能够根据我们自己的患者输入的信息进行研究，并获得适当的机构批准，以保护人类受试者研究。

DESCRIPTION (provided by applicant): 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.