Support Newborn Screening Research & Advocacy

Support Newborn Screening Research & Advocacy

ACD supports the validation of testing for GAMT Deficiency and the research of plausibility for CTD and AGAT newborn screening by assisting interested labs in obtaining a very small portion of patients’ dried blood spots (DBS) that were collected shortly after birth. Many laboratories retain these DBS for years. If you’d like to help in this effort, please complete this form so that we can check if your child’s spot is available. If it is available, you will be contacted by ACD. You will decide if you wish to consent in the particular research being done. Filling out this form does not give us permission to act on your behalf. It does not allow us to use your child’s DBS without your consent. We will not share your information with anyone for any reason. The intent of this form is to identify the availability of DBS and allow you to decide what research you will support.

Patient’s CCDS Diagnosis
(state/province, and country)
May we contact you to support newborn screening resource if we find that your child’s specimen is likely still stored at the place of birth’s laboratory?
Would you be willing to share your CCDS story with your local newborn screening review committee?