Save Babies Through Screening Foundation Position Statement on addition of new disorders to the SACHDNC recommended uniform panel and to individual state newborn screening programs:
Save Babies Through Screening Foundation is the only national non-profit organization devoted exclusively to newborn screening advocacy. It is run by parents who, in consultation with leading medical advisors, strive to improve the lives of children by working to prevent death and disability resulting from disorders detectable through newborn screening. The members of the Foundation take seriously their responsibility to families and children to advocate for newborn screening practices that benefit children and do not cause unintended harm. This requires a careful balance between the desire to screen for numerous possible disorders and the need to validate laboratory test performance, treatment efficacy, and follow-up processes for all candidate disorders. In light of these factors, Save Babies Through Screening Foundation has adopted the following position on the addition of new disorders to newborn screening programs:
- Save Babies Through Screening Foundation supports basic research, pilot studies, and clinical research to provide a comprehensive understanding of conditions and tests being considered for addition to the uniform screening panel.
- Save Babies Through Screening Foundation advocates for adherence to the now well-established, rigorous process undertaken by the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children, including evidence review, support for addressing evidence gaps through pilot projects, re-review, and deliberation by experts prior to endorsing additions to the panel.
- Save Babies Through Screening Foundation supports a consistent national approach to newborn screening to maintain justice and equal access to screening among the residents of all states. We do not support state-by-state legislative action to add disorders that have not been recommended by the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children and endorsed by the Secretary of the Department of Health and Human Services.
- Save Babies Through Screening Foundation joins others in voicing concerns that complete data do not yet exist for many aspects of screening and especially for outcomes and interventions, and supports the call for additional research.
- Save Babies Through Screening Foundation is concerned that the premature adoption of new newborn screening tests can result in unintended harm to children and families, particularly from follow-up interventions that carry high risk and may not have clearly demonstrated positive outcomes.