New York State Department of Health Receives Multi-year Federal Grant to Improve Surveillance of Spina Bifida

CDC Grant Totals $340,000 to Develop a Surveillance Database in New York State

Landmarks in New York to be Lit in Teal to Recognize World Spina Bifida and Hydrocephalus Day

ALBANY, N.Y. (October 25, 2024) - The New York State Department of Health today announced it has been awarded $340,000 in grant funding from the Centers for Disease Control and Prevention (CDC) for the first year of a five-year project (2024-2029) titled, "Surveillance of Spina Bifida Across the Lifespan." This grant announcement comes on World Spina Bifida and Hydrocephalus Day, recognized each year on October 25. Landmarks across the New York State are being lit in teal tonight, October 25, to raise awareness for these serious conditions.

"Spina bifida is a birth defect that can be a significant lifelong health burden to those it affects," State Health Commissioner Dr. James McDonald said. "This multi-year project will help inform our understanding of the condition, its lifelong medical impacts and how those in public health can improve equitable access to care."

Spina bifida is the most common central nervous system defect and is characterized by the protrusion of the spinal cord through a bony defect in the spine. About two to four babies out of every 10,000 live births are born with spina bifida. Many babies born with spina bifida also have hydrocephalus, which occurs when there is too much cerebrospinal fluid in the brain.

The survival rate for spina bifida in the United States has increased over the last 25 years. However, individuals with spina bifida often have complex health needs requiring lifelong medical care. As long-term survival improves, studies are needed to better understand disparities, issues with access to care, and complications.

The State Department of Health was among four sites awarded this grant funding. The purpose of the project is to develop a surveillance database in New York State to collect information on individuals of all ages living with spina bifida. These efforts help us better understand survival, healthcare use, reproductive health, and longer-term outcomes of people living with spina bifida.

The grant funding provided to New York will support efforts to combine existing administrative and clinical databases so that Department of Health researchers can gauge the following points:

  • Estimate the prevalence of spina bifida for all age groups in New York.
  • Describe long-term health outcomes and quality of life for people living with spina bifida.
  • Assess healthcare use and access, including sources of care.
  • Describe the influence of race, ethnicity, geography and sociodemographic factors on health outcomes and access to resources among the spina bifida population.

Information gained from this work will help inform policies, improve clinical care, and guide public health interventions, with the ultimate goal of improving health and quality of life for individuals affected by spina bifida, in New York and elsewhere.

In recognition of World Spina Bifida and Hydrocephalus Day, the following landmarks across the state will be lit teal tonight, October 25. Landmarks to be lit include:

Landmarks to be lit include:

  • World Trade Center
  • Governor Mario M. Cuomo Bridge
  • Kosciuszko Bridge
  • The H. Carl McCall SUNY Building
  • State Education Building
  • Alfred E. Smith State Office Building
  • Empire State Plaza
  • State Fairgrounds – Main Gate & Expo Center
  • Niagara Falls
  • The "Franklin D. Roosevelt" Mid-Hudson Bridge
  • Albany International Airport Gateway
  • Metropolitan Transportation Authority (MTA) Long Island Rail Road (LIRR) - East End Gateway at Penn Station
  • Fairport Lift Bridge over the Erie Canal
  • Moynihan Train Hall
  • Walkway Over the Hudson State Historic Park

For more information on spina bifida, visit the Centers for Disease Control and Prevention website here.