{"id":59323,"date":"2021-09-01T18:15:26","date_gmt":"2021-09-01T22:15:26","guid":{"rendered":"https:\/\/rarediseases.org\/newborn-screening-history-future-and-awareness-month\/"},"modified":"2024-09-24T13:03:35","modified_gmt":"2024-09-24T17:03:35","slug":"newborn-screening-history-future-and-awareness-month","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/newborn-screening-history-future-and-awareness-month\/","title":{"rendered":"Newborn Screening: History, Future and Awareness Month"},"content":{"rendered":"

Every September, we celebrate\u00a0and raise awareness for newborn screening (NBS) in the United\u00a0States\u00a0and the impact it has had on millions of families. Each year,\u00a0approximately four million babies are screened for serious disorders that are present at birth. Of those four million, screening identifies over 12,000 infants annually with a condition that, if left undiagnosed and untreated, would cause severe disability or death.\u00a0<\/span>\u00a0<\/span><\/p>\n

History\u00a0<\/strong><\/p>\n

NBS traces its origins to the 1950s and 1960s, when Dr. Robert Guthrie developed a blood test to screen for a condition called phenylketonuria (PKU) shortly after birth and subsequently began conducting pilot studies to identify pre-symptomatic newborns with PKU. The success of this effort led other states to begin screening newborns, and in a few short years, NBS took off. By the mid-1960s, almost every state was testing for PKU.<\/p>\n

Since the 1960s, NBS programs throughout the US have increased the number of newborns screened at birth and, as a result, saved and improved lives. NBS has evolved into one of the most effective, equitable public health programs in the US. By screening almost every American child born, this program is inclusive of every demographic group and ensures screening is done equitably. As the program has evolved, more conditions have been evaluated and added to testing panels to save or improve the lives of more infants.<\/p>\n

NBS Today\u00a0<\/strong><\/p>\n

There are programs in all\u00a050\u00a0states and\u00a0the\u00a0territories ensuring almost every single child in the US\u00a0is tested\u00a0within 24-48 hours of being born. Currently, all\u00a0NBS programs\u00a0test for at least\u00a031\u00a0of the\u00a035\u00a0core conditions on the <\/span>Recommended Uniform Screening Panel<\/span><\/a> (RUSP). These\u00a0conditions have been formally recommended by the Health Resources Services Administration (HRSA) within the federal government for states to screen.\u00a0This is currently the 7th decade of newborn screening in the United States. When NBS began in the 1960s, there was one federally recommended condition; now there are 35.<\/p>\n

While states retain the choice to screen for whichever conditions they\u00a0prefer, many\u00a0choose\u00a0to include\u00a0most or\u00a0all\u00a0of\u00a0the RUSP and will sometimes screen for secondary conditions. To be included in the RUSP, a condition must have a test that can detect the disease pre-symptomatically. There must also be an available treatment for the condition. New conditions are added to the RUSP\u00a0through\u00a0a process of nomination and a thorough vetting of the condition, the diagnostic test to detect it, and the treatment for the condition. The pace of adding conditions to the RUSP varies; the most recent condition,\u00a0spinal\u00a0muscular\u00a0atrophy (SMA), was added in 2018. Currently,\u00a0there are two conditions in the different phases of consideration.\u00a0It frequently\u00a0takes a few years for states to\u00a0incorporate\u00a0the new\u00a0condition\u00a0into their panel\u00a0because\u00a0adding a condition usually requires approval from a state authority, additional equipment, and in many cases, additional staffing expertise.<\/p>\n

NORD NBS Engagement\u00a0<\/strong><\/p>\n

For\u00a0the past\u00a0six\u00a0years, NORD has published an annual <\/span>State Report Card<\/span><\/a>, <\/span>which\u00a0includes\u00a0an\u00a0evaluation\u00a0of\u00a0NBS programs around the country. NORD evaluated programs by looking at several key areas in each state: the number of RUSP conditions screened for, how the state added RUSP core conditions, how state NBS programs are funded, use of remaining dried blood spot specimen collected from the infant, and the presence and role of an NBS advisory committee. These elements provide NORD with the information we need to\u00a0determine\u00a0a \u201cgrade.\u201d<\/p>\n

In addition, NORD\u00a0also\u00a0engages with the\u00a0administration and\u00a0with\u00a0Congress about the importance of NBS.\u00a0Recently,\u00a0NORD has been\u00a0pressing Congress\u00a0to\u00a0pass\u00a0<\/span>HR 482<\/span><\/a>, the Newborn Screening Saves Lives Reauthorization Act, which has been passed by the House of Representatives and awaits consideration in the Senate. This bill would reauthorize key programs at the Centers for Disease Control and Prevention (CDC) and HRSA at the federal level. Additionally, NORD has been actively advocating for increased federal funding for those critical programs so that they can operate at the highest possible level and provide assistance to the states.<\/span><\/p>\n

Future of NBS\u00a0\u00a0<\/strong><\/p>\n

The\u00a0long-term\u00a0success of the NBS programs relies on\u00a0patients,\u00a0the\u00a0parents of children whose lives have been saved or improved by NBS,\u00a0as well as the dedicated professionals at state NBS programs who work tirelessly,\u00a0to share their stories and expertise with policymakers.<\/p>\n

If you are willing to share your NBS story, please click here<\/span><\/a>.<\/span><\/p>\n

NORD\u2019s\u00a0vision\u00a0for the\u00a0NBS environment\u00a0is one\u00a0where each state can test for the entire RUSP, states have the authority to add new RUSP conditions as they see fit,\u00a0programs\u00a0have adequate funding mechanisms\u00a0so they may test every child born for as many conditions as\u00a0feasible\u00a0and\u00a0research\u00a0is\u00a0conducted\u00a0to\u00a0ensure\u00a0the\u00a0accuracy\u00a0of\u00a0current\u00a0NBS\u00a0tests\u00a0and the development of new tests.<\/p>\n

We hope that you will join us throughout the month\u00a0of September to\u00a0celebrate and continue the fight\u00a0for\u00a0newborn screening in\u00a0our country.\u00a0NORD has collated many of its\u00a0<\/span>NBS activities and resources<\/span><\/a>, <\/span>and we encourage members of the rare disease community to share NORD social media posts\u00a0and\u00a0tag\u00a0us when engaging on social media.<\/p>\n

Reach out to Richard White\u00a0(<\/span>rwhite@rarediseases.org<\/span><\/a>) with any stories or questions about\u00a0NBS.<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

Every September, we celebrate\u00a0and raise awareness for newborn screening (NBS) in the United\u00a0States\u00a0and the impact it has had on millions of families. Each year,\u00a0approximately four million babies are screened for … <\/p>\n

Continue reading “Newborn Screening: History, Future and Awareness Month”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[232,190,2428],"tags":[2832,2831,1026,2435,1167,2835,2833,2834],"class_list":["post-59323","post","type-post","status-publish","format-standard","hentry","category-advocacy","category-featured-news","category-newborn-screening","tag-nbs","tag-newborn","tag-newborn-screening","tag-newborn-screening-awareness-month","tag-phenylketonuria","tag-pku","tag-recommended-uniform-screening-panel","tag-rusp"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59323","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=59323"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59323\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59323"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59323"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59323"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}