The Advisory Committee on Heritable Disorders in Newborns and Children Recommends Adrenoleukodystrophy (X-ALD) for RUSP
The Adrenoleukodystrophy (ALD) patient and physician community has advocated for years to have ALD added to the Recommended Uniform Screening Panel (RUSP). RUSP is the list of diseases that the federal government through the Secretary of Health and Human Services recommends that all states test newborns.
On August 25, 2015, the Advisory Committee on Heritable Disorders in Newborns and Children met in Rockville, MD to consider the implications of adding X-linked Adrenoleukodystrophy (X-ALD) to the U.S. RUSP for newborns.
This meeting was the culmination of years of work to gather expert opinion and unpublished data to build the case for the clear benefit and feasibility of newborn screening of ALD in the U.S. Parents and family members gave heart-wrenching public testimony during the public comment period on how newborn screening and early detection can save lives and impact families.
The Advisory Committee weighed the harms and benefits of screening for both the newborn and the family overall to form a conclusion. Ultimately, the majority of the Committee voted yes, not only to recommend ALD’s addition to the RUSP, but to also have funding provided so that the States can implement and track outcomes, something none of the other diseases were given. This recommendation is now in the hands of the Secretary of Health and Human Services, awaiting his signature.
The United Leukodystrophy Foundation has supported ALD newborn screening with pilot grants and has followed the development of ALD screening at its annual meetings over the last 8 years. The ULF honors and thanks those families who lobbied long and hard for ALD newborn screening, along with the ULF researchers who participated in the development of ALD screening.