Newborn Screening for Adrenoleukodystrophy

We believe the availability of newborn screening will prove extremely important in the identification of patients at risk, and in minimizing the long-term effects of their disease. In February 2017, 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 our Leukodystrophy Center leukodystrophy@lists.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.

The healthcare team includes three international experts in pediatric blood and marrow transplantation for ALD, a neurologist, a neuroradiologist, an endocrinologist, a 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.

Minnesota looks to save lives with additions to newborn screening program 

Other States

  • CaliforniaThe California Department of Public Health’s Genetic Disease Screening Program (GDSP) began screening for adrenoleukodystrophy in mid-September 2016.
  • Connecticut was the second state in the nation to implement a statewide screening program to test all newborns for adrenoleukodystrophy. The ALD test was implemented by the State Public Health Laboratory on July 1, 2016.
  • Delaware started newborn screening for ALD in January 2020.
  • Florida On May 1, 2018, the Florida Department of Health, Newborn Screening Program began screening all newborns for adrenoleukodystrophy. This addition to the panel of disorders screened in Florida was recommended in 2016 by the Florida Genetics and Newborn Screening Advisory Council, and funding was authorized during the 2017 Legislative session.
  • Georgia started newborn screening for ALD on May 13, 2021 following a pilot.
  • Illinois started newborn screening for ALD in June 2019.
  • Kentucky started newborn screening for ALD on July 9, 2018.
  • Massachusetts started newborn screening for ALD as a pilot. 
  • Michigan started newborn screening for ALD in October 2019.
  • Nebraska started newborn screening for ALD in July 2018.
  • New Jersey started newborn screening for ALD on July 8, 2019.
  • New YorkIn 2013, New York became the first state in the United States to test all newborns for adrenoelukodystrophy. We are inspired by Elisa Seeger for her tireless advocacy, and we hope that Congress will pass “Aidan’s Law” requiring newborn screening for ALD in all 50 states.
  • North Carolina started newborn screening for ALD as a pilot.
  • Pennsylvania started newborn screening for ALD on April 2017.
  • Rhode Island started newborn screening for ALD on April 2019.
  • Tennessee - On May 7, 2015, Kathy Switow, Elisa Seeger, and Jenny Weldon attended the Genetics Advisory Committee meeting in Tennessee. Kathy spoke about her son Blake and his journey with adrenoleukodystrophy and asked the committee to consider adding ALD to the newborn screening panel. Elisa spoke about her son Aidan and shared statistics from New York. Validation testing began in January 2018. It took three years, but the State of Tennessee Department of Health began screening for adrenoleukodystrophy on April 30, 2018.
  • Texas started newborn screening in August 2019.
  • Utah will begin newborn screening for ALD in 2020.
  • Vermont started newborn screening for ALD in May 2019.
  • WashingtonThe Ethan Zakes Foundation began working with the State Board of Health in 2013 to explore the possibility of adding adrenoleukodystrophy to Washington's newborn screening panel. The Washington State Department of Health added ALD to the newborn screening panel on  March 1, 2018.
  • Washington, D.C. started newborn screening for ALD in September 2018.