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.

STATEALDKrabbeFabryNeimann-PickMLD
AlabamaYes
Alaska
Arizona* mobilizing efforts
Arkansas* in process
CaliforniaYes
Colorado* mobilizing efforts
ConnecticutYes
DelawareYes
District of ColumbiaYes
FloridaYes
GeorgiaYes
Hawaii
Idaho
IllinoisYesYesYesYes
Indiana* beginning July 1, 2021* beginning July 1, 2020
Iowa* mobilizing efforts
Kansas
KentuckyYesYes
Louisiana* mobilizing efforts* in process
Maine* only through New England Newborn Screening Program
Maryland* in processYes
MassachusettsYes
MichiganYes
MinnesotaYes
Mississippi
Missouri* mobilizing effortsYesYes
Montana
NebraskaYes
Nevada
New Hampshire* only through New England Newborn Screening Program
New Jersey* in processYesYesYes
New Mexico* mobilizing efforts* in process* in process
New YorkYesYes * selected areas
North Carolina* in process
North Dakota
Ohio* in processYes
Oklahoma
OregonYes
PennsylvaniaYesYesYesYes
Rhode IslandYes
South Carolina
South Dakota
TennesseeYesYesYes
TexasYes
Utah* in process
VermontYes
Virginia* mobilizing efforts
WashingtonYes* 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.

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