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Hydrocephalus: Chronic Medical Conditions In Children

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Since the vast majority of these children will survive, only recently has it been recognized that there is an unmet need to provide children with chronic medical conditions, including hydrocephalus, access to physicians and other caregivers capable of providing follow up care and disease management as they transition form adolescence to adulthood. It estimated that there are approximately 40,000 individuals between the ages of 18 and 35 with hydrocephalus 74. However, most neurosurgeons who care for adults with hydrocephalus do not have the training to diagnose and treat patients with congenital hydrocephalus. Except for a few sites that actively coordinate follow up care up to and into adulthood, for many of these patients, the care is fragmented.

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