Advancing Research for Hydrocephalus Act of 2015 (HR 2313, 114th Congress)
What it does
Provides guidelines for establishing the National Hydrocephalus Surveillance System, including the potential capture of genetic abnormalities that lead to the condition.
Hydrocephalus, “a buildup of fluid inside the skull that leads to brain swelling,” occurs in both children and adults; its causes are still not well understood. H.R. 2313 seeks to enhance and expand a tool for tracking the distribution and determinants of this condition across the U.S. population. Specifically, the bill would amend the Public Health Service Act, directing the Centers for Disease Control and Prevention to create a National Hydrocephalus Surveillance System. The legislation:
- Directs that the System design facilitates further research on hydrocephalus;
- Outlines the collection and storage of System information, including:
- A requirement to incorporate the incidence and prevalence of hydrocephalus in the United States;
- To the extent practical, a standard to include other available information on hydrocephalus such as (1) demographics, (2) changes over time regarding incidence and prevalence of hydrocephalus in children and adults, (3) epidemiology of the condition, (4) history of congenital and acquired hydrocephalus, (3) detection, management and treatment approaches, (4) events or influence that occur during fetal development, or genetic abnormalities that lead to the condition, and (5) development of outcomes measures.
- Requires consultation with appropriate experts, including (1) epidemiologists, clinicians, and researchers with expertise in hydrocephalus disease or disease surveillance, (2) representatives of national voluntary health associations, and (3) health information technology experts or other information management specialists;
- Allows for the awarding of grants or entrance into contracts or cooperative agreements with public or private nonprofit entities to create the System;
- Ensures System access to the public, including researchers; and
- Ensures privacy and security protections that, at a minimum, meet privacy and security protection under Health Insurance Portability and Accountability Act (HIPAA).
The Secretary of Health and Human Services (who oversees the Centers for Disease Control and Prevention) will report to Congress concerning the implementation of the National Hydrocephalus Surveillance System, no later than four years after the bill’s enactment.
Hydrocephalus is a condition associated with excessive accumulation of cerebrospinal fluid (CSF) in the brain. CSF is a clear fluid that surrounds the brain and spinal cord and provides three life-sustaining functions: (1) keeps the brain tissue floating so that it can absorb shock to the head; (2) allows for transportation of nutrients to the brain and removes waste; and (3) flows between the cranium and spine and compensates for changes in the amount of blood within the brain. The balance between production and absorption of CSF is critical to proper function of the brain. Excessive accumulation of CSF results in an abnormal widening of ventricles (communicating network used by the brain), which creates potentially harmful pressure on the brain tissue.
Symptoms of hydrocephalus may vary among individuals. Hydrocephalus in infants often leads to a rapid increase in head circumference due to the expansion of their skull under excessive CSF accumulation. Other symptoms may include vomiting, irritability and seizures. Children and adults may experience different symptoms, including headaches followed by vomiting, nausea, blurred or double vision, problems with balance, poor coordination, or even changes in personality or cognition including memory loss.
Hydrocephalus can be either congenital or acquired. Congenital hydrocephalus is present at birth and may be caused by either events that occur during fetal development, or genetic abnormalities. Acquired hydrocephalus develops at the time of birth or after. This type of hydrocephalus can affect individuals of all ages and may be caused by injury or disease.
Causes of hydrocephalus are still unknown. It may result from inherited genetic abnormalities or developmental disorders such as those associated with neural defects including spina bifida and encephalocele. Other possible causes include complications during premature birth such as intraventricular hemorrhage and diseases such as tumors and traumatic brain injury. Active service members and veterans who have traumatic brain injury are especially susceptible to hydrocephalus. Currently, there are no effective cures for hydrocephalus.
Endorsements & Opposition
- The Hydrocephalus Association supports H.R. 2313 through its advocacy page, stating that the “registry would help us better understand the condition within our population and help to inform decisions around research, which is essential to finding treatment options – and, one day, a cure.”
More generally, there has been wide support for H.R. 6, 21st Century Cures Act, which establishes a National Neurological Diseases Surveillance System. The National Health Council’s letter of support for the bill includes the Hydrocephalus Association and the Pediatric Hydrocephalus Foundation.
- At present, there is no known opposition to H.R. 2313.