Emory University Newborn Screening Study

news | June 5, 2019

Emory University in Georgia is recruiting ALD patients of any age and gender to give a single blood sample to provide quality control for newborn screening of ALD. Below is a letter from Emory Lysosomal Storage Disease Center outlining the study:

Dear Community of ALD Connect:

Our team at the Emory Lysosomal Storage Disease Center in Atlanta, GA is working with the Centers for Disease Control and Prevention (the CDC) on a project to validate and provide quality control for newborn screening in Adrenoleukodystrophy (ALD) and other disorders. This project is to help states who are working on screening for ALD to make sure their testing plan is working. The CDC is asking us to collect blood samples of individuals who are affected with or are known carriers of ALD as a part of this project. We are partnering with ALD Connect to reach out and ask parents of children who are affected with ALD and individuals who are affected with ALD if they are willing to help us by providing a blood sample.

Participation in this project is completely voluntary and you may withdraw at any time. If you do choose to participate, each participant will be given a $50 gift certificate after the blood draw is complete, you will also receive a Certificate of Appreciation from the CDC.

Before you agree to participate, the study will be explained to you again in further detail and you will be asked to review and sign a consent form. If you are interested in more information or have any questions please reach out to Palak Bawa at 404-778-1014 or palak.bawa@emory.edu.