|Metabolic Disorder|| |
- Collecting repeat screens for CH
|Hemoglobin Disorder: Sickle Cell|| |
|Lysosomal Storage Disorder|| |
|Other Disorder: SCID |
- There are questions about how to triage abnormal SCID NBS results to ensure families are receiving proper follow-up
|Other Disorder: Cystic Fibrosis|
|Other Disorder: SMA|| |
- Cure SMA has developed a COVID-19 resource page for patients and providers, and has been holding webinars for the community. Additionally, they are organizing support programs for newly diagnosed families
- Muscular Dystrophy Association: COVID-19 Resources
|Other Disorder: X-ALD|| |
|Other Disorder: Hearing Loss |
- Audiology practices have closed, so confirmatory testing for presumptive positive hearing screens are postponed.
- During the pandemic, there may be alterations to newborn hearing screening activities
- Some hospitals that contract out for hearing screens wanted to restrict screeners from coming into the hospital/ discharge newborns without a hearing screen.
- Hands & Voices COVID-19 Resources
- The Texas Department of State Health Services emailed a letter to healthcare providers addressing frequently asked questions concerning newborn hearing screening activities in light of COVID-19
- The Tennessee NBS program recommends that babies with refer results on initial hearing screening be rescreened before discharge/ if they refer again, recommend follow-up diagnostics before 3 months of age. The program reminds hospitals/ birthing facilities of Claire's Law, which states that it is the responsibility of the hospital to ensure screening is done before 30 days of age
- The National Center for Hearing Assessment and Management at the Utah State University has compiled a list of COVID-19 related resources
- Challenges to EHDI Systems Amind the COVID-19 Crisis
- This resource describes how finding new ways to address EHDI challenges is vital to ensuring continuous care for children who are deaf or hard of hearing (D/HH) and their families.
|Other Disorder: Critical Congenital Heart Disease|| |
- National Organization for Rare Disorders: