Attention State Newborn Screening Programs:
ALD Incidence Project
We are partnering with Dr. Joseph Orsini from (NYSDOH) and Dr. Gerald Raymond (Johns Hopkins) to collect the most recent data for ALD Newborn Screening in the hopes of publishing a paper outlining the incidence rate of ALD.
New York started screening for ALD on December 30, 2013 and as of today 46 states are screening for ALD population-wide. It is likely that all states will be screening by the end of 2025. This is a huge accomplishment! We are all aware of the varying incidence rates for ALD since newborn screening began. Our goal is to collect data in each state and publish this information capturing the last decade of screening. All contributors will be acknowledged in the final published paper.
The reporting period is from the date screening for X-ALD went live in your state to December 31, 2024.
We are asking for the following information from your state:
Thank you to the programs that have already reported back to us. We will be following up with the others over the course of the next few months. You may also email the information to [email protected]
Thank you in advance for your help with this important project.
New York started screening for ALD on December 30, 2013 and as of today 46 states are screening for ALD population-wide. It is likely that all states will be screening by the end of 2025. This is a huge accomplishment! We are all aware of the varying incidence rates for ALD since newborn screening began. Our goal is to collect data in each state and publish this information capturing the last decade of screening. All contributors will be acknowledged in the final published paper.
The reporting period is from the date screening for X-ALD went live in your state to December 31, 2024.
We are asking for the following information from your state:
- Start date for ALD screening
- Total number of babies tested from start date to December 31, 2024
- Overall number of babies positive for ALD & overall incidence
- Number of male positives for ALD & male incidence
- Number of female positives for ALD & female incidence
- Other conditions diagnosed (Zellweger, PBD etc) and how many of each
Thank you to the programs that have already reported back to us. We will be following up with the others over the course of the next few months. You may also email the information to [email protected]
Thank you in advance for your help with this important project.
