Leukodystrophy Center

Newborn Screening for Adrenoleukodystrophy (ALD)

In February 2016, adrenoleukodystrophy was added to the Recommended Uniform Screening Panel, which is the list of disorders that are screened at birth and recommended by the Secretary of the Department of Health and Human Services in the United States.

If your baby has received a positive newborn screening test or a biochemical diagnosis of adrenoleukodystrophy (ALD), we're here to help no matter where you are located. Please email the Leukodystrophy Center (landb018@umn.edu).

Our multidisciplinary team of healthcare professionals at the University of Minnesota Masonic Children’s Hospital collaborates with the Minnesota Department of Health Newborn Screening Program (MDH-NBS) to address the varied and long-term spectrum of clinical needs for patients with adrenoleukodystrophy (ALD).

The healthcare team includes three international experts in pediatric blood and marrow transplantation for ALD, a neurologist, neuroradiologist, an endocrinologist, genetic counselor, and a public healthcare coordinator/newborn screening follow up specialist from the Minnesota Department of Health.

We offer comprehensive diagnostic evaluations, consultations, and coordinated follow-up care based upon the initial clinical encounter. Ongoing follow-up and monitoring is facilitated.

Clinical research participation opportunities are available to eligible subjects for innovative monitoring and treatment modalities. 

Minnesota

On June 15, 2016, thanks to tireless work by Shanna and Nick Quimby, the Minnesota Department of Health (MDH) added adrenoleukodystrophy to its list of conditions for which all newborns in the state are screened. That legislation is known as The Super Gav Act.

MN Department of Health

Family Fact Sheet for Elevated C26:0-lysophosphatidylcholine

News Release, June 15, 2016: Minnesota looks to save lives with additions to newborn screening program