Resource Library

Welcome to the NewSTEPs resource library! This tool incorporates all resources archived on the NewSTEPs website, which can be filtered below by disorder, type and topic. Submissions of additional resources are encouraged and accepted as the library continues to grow. Please direct any submissions to Sari Edelman.

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New Disorders Workgroup Winter Webinar Series Part One: Newborn Screening Considerations for Additional Lysosomal Disorders and GAMT
2:00 pm EST | January 21, 2021
Add to Calendar 2021-01-21 14:00:00 2021-01-20 13:34:29 New Disorders Workgroup Winter Webinar Series Part One: Newborn Screening Considerations for Additional Lysosomal Disorders and GAMT The Association of Public Health Laboratories (APHL) Newborn Screening Technical assistance and Evaluation Program (NewSTEPs) is pleased to announce the first webinar in the New Disorders Workgroup Winter Webinar Series on Thursday, January 21 at 2:00 pm ET. This three-part webinar series will provide updates from programs screening for disorders not currently on the RUSP, both as pilot programs and as components of universal screening. This series will end with a discussion of future disorders that have been nominated for review by the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) and/or are in current pilots. This webinar will provide an overview of the lysosomal disorders and other metabolic disorders being screened for outside of the RUSP. Speakers will provide screening considerations and experiences for the lysosomal disorders that were previously nominated but not recommended for addition to the RUSP. These disorders include Fabry, Krabbe, and Niemann-Pick Disease.  Speakers will also discuss screening considerations for additional lysosomal disorders and other disorders, including Mucopolysaccharidosis II (MPS II), Gaucher, and Guanidinoacetate Methyltransferase (GAMT).  OBJECTIVES At the conclusion of the program, the participant will be able to: Review screening considerations for Fabry, Krabbe, Niemann-Pick Disease, Gaucher, MPS II, and GAMT Describe state experiences screening for these disorders Examine screening methodologies and tiered testing options Discuss follow-up processes and protocols and recommended practices SPEAKERS Jennifer Crew, PhD, Acting Newborn Screening Laboratory Section Chief, Illinois Department of Health Joan Ehrhardt, MS, CGC, Genetic Counselor, Illinois Department of Health Kim Hart, MS, LCGC, Program Manager, Utah Department of Health Tracy Klug, Unit Chief, Newborn Screening, Missouri State Public Health Laboratory Julie Raburn-Miller, MSW, LCSW, Genetics Program Coordinator, Missouri State Newborn Screening Program CONTINUING EDUCATION APHL is approved as a provider of continuing education programs in the clinical laboratory sciences by the ASCLS P.A.C.E® Program, Florida and CPH recertification. P.A.C.E® is accepted by all licensure states except Florida. If approved, this webinar will provide 1.5 contact hour for participants who successfully complete this webinar. Please use this link to register for the webinar This resource is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant # U22MC24078. This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the US Government. Location NewSTEPs America/New_York public