{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,31]],"date-time":"2026-08-31T10:48:03Z","timestamp":1788173283892,"version":"build-2803163510"},"reference-count":19,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2022,9,3]],"date-time":"2022-09-03T00:00:00Z","timestamp":1662163200000},"content-version":"vor","delay-in-days":94,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["American J of Med Genetics Pt C"],"published-print":{"date-parts":[[2022,6]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Since the early 2000s, many families impacted by Krabbe disease have tried to implement newborn screening for this rare fatal neurological disorder in their home state. However, despite grassroots efforts, states have been unable to agree to newborn screening for Krabbe disease due to poor testing mechanisms, lack of understanding of the developmental outcomes of transplantation, low incidence rate, and more. Over the past five years, many organizations and experts have made significant strides to help Krabbe disease meet the eligibility requirements for state panels and the Recommended Uniform Screening Panel (RUSP). Nevertheless, ethicists and newborn screening advisory committees continue to disregard the progress our community has made in the treatment and screening of Krabbe disease.<\/jats:p>","DOI":"10.1002\/ajmg.c.31994","type":"journal-article","created":{"date-parts":[[2022,9,3]],"date-time":"2022-09-03T08:05:25Z","timestamp":1662192325000},"page":"153-155","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Why must the debate continue on Krabbe disease newborn screening?"],"prefix":"10.1002","volume":"190","author":[{"given":"Stacy","family":"Pike\u2010Langenfeld","sequence":"first","affiliation":[{"name":"The Legacy of Angels Foundation  Rosemount Minnesota United States"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2022,9,3]]},"reference":[{"key":"e_1_2_4_2_1","unstructured":"Bahnsen C.(2020).Updated test promises fewer false positives in newborn screening for Krabbe disease. Insights.https:\/\/news.mayocliniclabs.com\/2020\/05\/28\/updated\u2010test\u2010promises\u2010less\u2010false\u2010positives\u2010in\u2010newborn\u2010screening\u2010for\u2010krabbe\u2010disease\/"},{"key":"e_1_2_4_3_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-018-0872-9"},{"key":"e_1_2_4_4_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-019-1018-4"},{"key":"e_1_2_4_5_1","doi-asserted-by":"publisher","DOI":"10.3390\/ijns6030066"},{"key":"e_1_2_4_6_1","doi-asserted-by":"publisher","DOI":"10.1089\/hum.2017.151"},{"key":"e_1_2_4_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.14258"},{"key":"e_1_2_4_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ymgme.2017.05.015"},{"key":"e_1_2_4_9_1","doi-asserted-by":"publisher","DOI":"10.1089\/hum.2021.245"},{"key":"e_1_2_4_10_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-018-0766-x"},{"key":"e_1_2_4_11_1","doi-asserted-by":"publisher","DOI":"10.1373\/clinchem.2016.264952"},{"key":"e_1_2_4_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ymgme.2019.11.254"},{"key":"e_1_2_4_13_1","doi-asserted-by":"publisher","DOI":"10.1002\/jnr.23781"},{"key":"e_1_2_4_14_1","doi-asserted-by":"publisher","DOI":"10.1182\/bloodadvances.2021006094"},{"key":"e_1_2_4_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bbmt.2011.10.013"},{"key":"e_1_2_4_16_1","unstructured":"Save Babies Through Screening Foundation. (2022).Newborn Screening Saves Babies \u2026 One Foot at a Time (ENGLISH).https:\/\/www.youtube.com\/watch?v=G_qjpjO3gFE"},{"key":"e_1_2_4_17_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2021-053175"},{"key":"e_1_2_4_18_1","doi-asserted-by":"publisher","DOI":"10.1373\/clinchem.2016.256255"},{"key":"e_1_2_4_19_1","doi-asserted-by":"publisher","DOI":"10.1212\/wnl.0000000000004418"},{"key":"e_1_2_4_20_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood.2020005477"}],"container-title":["American Journal of Medical Genetics Part C: Seminars in Medical Genetics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ajmg.c.31994","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/ajmg.c.31994","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ajmg.c.31994","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,22]],"date-time":"2023-08-22T05:16:30Z","timestamp":1692681390000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/ajmg.c.31994"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,6]]},"references-count":19,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2022,6]]}},"alternative-id":["10.1002\/ajmg.c.31994"],"URL":"https:\/\/doi.org\/10.1002\/ajmg.c.31994","archive":["Portico"],"relation":{},"ISSN":["1552-4868","1552-4876"],"issn-type":[{"value":"1552-4868","type":"print"},{"value":"1552-4876","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,6]]},"assertion":[{"value":"2022-07-15","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-08-11","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-09-03","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}