{"id":276338,"date":"2025-02-10T12:05:28","date_gmt":"2025-02-10T17:05:28","guid":{"rendered":"https:\/\/rarediseases.org\/?p=276338"},"modified":"2025-12-22T14:15:22","modified_gmt":"2025-12-22T19:15:22","slug":"newborn-screening-report","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/newborn-screening-report\/","title":{"rendered":"National Organization for Rare Disorders (NORD) Issues New Report on Lifesaving Newborn Screening Programs"},"content":{"rendered":"

NORD offers\u00a0<\/span>comprehensive review on statewide practices related to <\/span><\/span>\u00a0<\/span>
<\/span>screening <\/span>sample retention, provides policy recommendations<\/span><\/span><\/em><\/p>\n

February 10, 2025, Washington, D.C. <\/span><\/b>\u2014<\/strong> The National Organization for Rare Disorders (NORD\u00ae<\/sup>) today published a new report on the critical role that leftover newborn screening samples play in public health and rare disease research. <\/span>\u00a0<\/span><\/p>\n

\u201cPreserving Public Trust in the U.S. Newborn Screening System<\/a>,\u201d authored by NORD in partnership with a dozen rare disease patient advocacy organizations, explores the retention and secondary usage of residual dried blood spots (DBS) collected during newborn screening.<\/span><\/p>\n

NORD\u2019s report emphasizes the critical role that residual DBS play in ensuring the effective functioning of state and territorial newborn screening programs, as well as advancing rare disease and public health research. However, states\u2019 ability to use these samples is under threat from recent legal challenges, law enforcement actions, and health misinformation.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cNewborn screening saves the lives of thousands of children in the United States every year. Any policy changes must preserve public trust and embrace transparency so as not to jeopardize these critical health programs,\u201d said Heidi Ross, NORD Vice President,\u202fPolicy\u202fand Regulatory Affairs.<\/span>\u00a0<\/span><\/p>\n

NORD, in partnership with member organizations representing individuals impacted by conditions that are included or recommended for inclusion in newborn screening programs, has also drafted a set of policy principles and recommendations laying out proactive steps policymakers can take to fortify public trust and ensure continued participation in newborn screening.<\/span>\u00a0<\/span><\/p>\n

To address current challenges to newborn screening programs\u2019 retention and secondary use of residual DBS, NORD recommends the following actions:\u00a0<\/span>\u00a0<\/span><\/p>\n