COVID-19 NBS Response: Disorder Specific

Date: July 2020

COVID-19 Disorder Specific Challenges, Practices and Resources: (refer to the COVID-19 web page)

Practices	Challenges	Resources/Strategies
Metabolic Disorder		Metabolic Support UK Coronavirus Advice National Urea Cycle Disorders Foundation: COVID-19 Information for Patients with Urea Cycle Disorders and their Families
Endocrine Disorder	Collecting repeat screens for CH	British Thyroid Association/ Society for Endocrinology Statement Regarding Issues Specific to Thyroid Dysfunction during the COVID-19 Pandemic Living with CAH: What you should know about COVID-19 After assessing PCP comfort level, obtain a serum fT4 and TSH (not a repeat screen) when the family is willing to come in for a blood draw/ call the Endocrine Consultant with questions.
Hemoglobin Disorder: Sickle Cell		COVID-19 and Sickle Cell Disease: Frequently Asked Questions Sickle Cell Disease Association of America: Sickle Cell Disease and COVID-19 Provider Advisory Sickle Cell Society: COVID-19 & Sickle Cell Disorder American Society of Hematology: Sickle Cell Disease Patients Presenting to the Emergency Department During the COVID-19 Pandemic - Considerations and a Checklist
Other Disorder: SCID	There are questions about how to triage abnormal SCID NBS results to ensure families are receiving proper follow-up	Immune Deficiency Foundation COVID-19 Resources The Immune Deficiency Foundation (IDF) has published a blog post with considerations for caretakers and persons with SCID in light of COVID-19 SCID and COVID-19: Considerations for caretakers and persons with SCID More information about COVID-19 and Primary Immunodeficiency (PI) can be found on the IDF website: IDF Coronavirus Updates in English IDF Coronavirus Updates in Spanish
Other Disorder: Cystic Fibrosis		The Cystic Fibrosis Foundation has issued guidance to its accredited CF Centers: Cystic Fibrosis Foundation COVID-19 Newborn Screening Guidance Cystic Fibrosis Foundation: CF and Coronavirus
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 Cure SMA COVID-19 Information Center Muscular Dystrophy Association: COVID-19 Resources
Other Disorder: X-ALD		ALD Connect: ALD and COVID-19 Frequently Asked Questions
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 Texas Department of State Health Services Newborn Hearing Screening FAQs 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 Guidance on Newborn Hearing Screening Newborn Hearing Screening Follow-Up Recommendations The National Center for Hearing Assessment and Management at the Utah State University has compiled a list of COVID-19 related resources COVID-19 Resources Hearing screening script for providers in light of COVID-19 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		Mended Hearts: COVID-19 Resources
General		National Organization for Rare Disorders: NORD's Peter L. Saltonstall on Coronavirus Prevention and Risk for the Rare Community A Rare Response: Addressing the COVID-19 Pandemic Webinar

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COVID-19