Dear Newborn Screening Community:
In September 2015, the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) recommended to the Secretary of Health and Human Services (HHS) to expand the Recommended Uniform Screening Panel (RUSP) to include X-linked Adrenoleukodystropy (X-ALD). As most of you know, Secretary Burwell recently accepted these recommendation to expand the RUSP to include addition of X-ALD (and Mucopolysaccharidosis type I).
Some newborn screening programs in the US are currently screening for X-ALD and others will follow in the coming years. There is a need for more information sharing to better understand the clinical aspects of X-ALD and available screening methods.
We are pleased to announce a webinar, “X-ALD 101: Clinical Aspects and Screening Methods” to be held on Wednesday April 20, 2016 from 3:00 - 4:30 PM ET. This webinar is geared towards those who are or may be responsible for screening, diagnosing and treating X-ALD. This webinar is sponsored by APHL’s Quality Assurance/Quality Control Subcommittee of the Newborn Screening and Genetics in Public Health Committee and the Newborn Screening Quality Assurance Program, Centers for Disease Control and Prevention.
The webinar will provide the audience with information regarding the clinical aspects of X-ALD including an overview of the disease, available screening methods, follow-up and diagnostic evaluation, treatment options and available CDC Quality Assurance materials.
You may join this webinar by using the web link and toll-free phone line below. Due to a limited number of available phone lines, we ask that you utilize a single line for your institution, if possible.
Webinar access information:
Step 1: Dial In
U.S. & Canada: 866.740.1260
Access Code: 4852701