Testing for Leukodystrophy
Newborn screening is a state public health service that reaches each of the nearly 4 million babies born in the United States each year. It ensures that all babies are screened for certain serious conditions at birth, and for those babies with the conditions, it allows doctors to start treatment before some of the harmful effects happen. Newborn screening is performed soon after the birth, and in most cases, while mom and baby are still in the hospital.
Families who are aware that a leukodystrophy, especially the types that are not covered by State Mandated Newborn Screening, is in their medical history should speak with a genetic counselor to see what tests can be done prenatally or ensure that testing is done as soon as possible after the baby is born.
Over the past several years, the ULF community has actively participated in lobbying for leukodystrophy newborn screening. Because there are so many types and mutations of types of leukodystrophies, it’s difficult to screen for everything. The newborn screening tests which are done in the United States are decided on a state-by-state basis. Below you will find a list of the screening and States that have acted upon the efforts for this critical screening.
| STATE | ALD | Krabbe | Fabry | Neimann-Pick | MLD |
|---|---|---|---|---|---|
| Alabama | Yes | ||||
| Alaska | |||||
| Arizona | * mobilizing efforts | ||||
| Arkansas | * in process | ||||
| California | Yes | ||||
| Colorado | * mobilizing efforts | ||||
| Connecticut | Yes | ||||
| Delaware | Yes | ||||
| District of Columbia | Yes | ||||
| Florida | Yes | ||||
| Georgia | Yes | ||||
| Hawaii | |||||
| Idaho | |||||
| Illinois | Yes | Yes | Yes | Yes | |
| Indiana | * beginning July 1, 2021 | * beginning July 1, 2020 | |||
| Iowa | * mobilizing efforts | ||||
| Kansas | |||||
| Kentucky | Yes | Yes | |||
| Louisiana | * mobilizing efforts | * in process | |||
| Maine | * only through New England Newborn Screening Program | ||||
| Maryland | * in process | Yes | |||
| Massachusetts | Yes | ||||
| Michigan | Yes | ||||
| Minnesota | Yes | ||||
| Mississippi | |||||
| Missouri | * mobilizing efforts | Yes | Yes | ||
| Montana | |||||
| Nebraska | Yes | ||||
| Nevada | |||||
| New Hampshire | * only through New England Newborn Screening Program | ||||
| New Jersey | * in process | Yes | Yes | Yes | |
| New Mexico | * mobilizing efforts | * in process | * in process | ||
| New York | Yes | Yes | * selected areas | ||
| North Carolina | * in process | ||||
| North Dakota | |||||
| Ohio | * in process | Yes | |||
| Oklahoma | |||||
| Oregon | Yes | ||||
| Pennsylvania | Yes | Yes | Yes | Yes | |
| Rhode Island | Yes | ||||
| South Carolina | |||||
| South Dakota | |||||
| Tennessee | Yes | Yes | Yes | ||
| Texas | Yes | ||||
| Utah | * in process | ||||
| Vermont | Yes | ||||
| Virginia | * mobilizing efforts | ||||
| Washington | Yes | * pilot study | * pilot study | * pilot study | * pilot study |
| West Virginia | * mobilizing efforts | ||||
| Wisconsin | |||||
| Wyoming |
Check out the BabysFirstTest.org website for more details about testing or contact the ULF if you are interested in sending a letter to your local government representative advocating for leukodystrophy-focused newborn screenings for your state.