{"id":"https://openalex.org/W2012742583","doi":"https://doi.org/10.1002/mrdd.20125","title":"The role of National Library of Medicine\u00ae web sites in newborn screening education","display_name":"The role of National Library of Medicine\u00ae web sites in newborn screening education","publication_year":2006,"publication_date":"2006-01-01","ids":{"openalex":"https://openalex.org/W2012742583","doi":"https://doi.org/10.1002/mrdd.20125","mag":"2012742583","pmid":"https://pubmed.ncbi.nlm.nih.gov/17183579"},"language":"en","primary_location":{"id":"doi:10.1002/mrdd.20125","doi":"https://doi.org/10.1002/mrdd.20125","is_oa":false,"landing_page_url":"https://doi.org/10.1002/mrdd.20125","pdf_url":null,"source":{"id":"https://openalex.org/S160629904","display_name":"Mental Retardation and Developmental Disabilities Research Reviews","issn_l":"1080-4013","issn":["1080-4013","1098-2779"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core"],"host_organization":"https://openalex.org/P4310320595","host_organization_name":"Wiley","host_organization_lineage":["https://openalex.org/P4310320595"],"host_organization_lineage_names":["Wiley"],"type":"journal"},"license":"public-domain","license_id":"https://openalex.org/licenses/public-domain","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Mental Retardation and Developmental Disabilities Research Reviews","raw_type":"journal-article"},"volume":null,"type":"article","is_traditional":true,"indexed_in":["crossref","pubmed"],"open_access":{"is_oa":false,"oa_status":"closed","oa_url":null,"any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5073842174","display_name":"Cathy Fomous","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Cathy Fomous","raw_affiliation_strings":["Aspens Systems Corporation, Rockville, Maryland, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Aspens Systems Corporation, Rockville, Maryland, USA","institution_ids":[]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5110282136","display_name":"Naomi Miller","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I1299303238","display_name":"National Institutes of Health","ror":"https://ror.org/01cwqze88","country_code":"US","type":"government","lineage":["https://openalex.org/I1299022934","https://openalex.org/I1299303238"]},{"id":"https://openalex.org/I2800548410","display_name":"United States National Library of Medicine","ror":"https://ror.org/0060t0j89","country_code":"US","type":"archive","lineage":["https://openalex.org/I1299022934","https://openalex.org/I1299303238","https://openalex.org/I2800548410"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Naomi Miller","raw_affiliation_strings":["National Library of Medicine, National Institutes of Health, Bethesda, Maryland"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"National Library of Medicine, National Institutes of Health, Bethesda, Maryland","institution_ids":["https://openalex.org/I1299303238","https://openalex.org/I2800548410"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":2,"corresponding_author_ids":["https://openalex.org/A5110282136"],"corresponding_institution_ids":["https://openalex.org/I1299303238","https://openalex.org/I2800548410"],"apc_list":null,"apc_paid":null,"fwci":0.5817,"has_fulltext":false,"cited_by_count":2,"citation_normalized_percentile":{"value":0.75473754,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":88,"max":93},"biblio":{"volume":"12","issue":"4","first_page":"305","last_page":"312"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10737","display_name":"Health Literacy and Information Accessibility","score":0.98580002784729,"subfield":{"id":"https://openalex.org/subfields/3600","display_name":"General Health Professions"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T10737","display_name":"Health Literacy and Information Accessibility","score":0.98580002784729,"subfield":{"id":"https://openalex.org/subfields/3600","display_name":"General Health Professions"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T11027","display_name":"Metabolism and Genetic Disorders","score":0.012500000186264515,"subfield":{"id":"https://openalex.org/subfields/1308","display_name":"Clinical Biochemistry"},"field":{"id":"https://openalex.org/fields/13","display_name":"Biochemistry, Genetics and Molecular Biology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},{"id":"https://openalex.org/T12027","display_name":"Social Media in Health Education","score":0.00019999999494757503,"subfield":{"id":"https://openalex.org/subfields/3306","display_name":"Health"},"field":{"id":"https://openalex.org/fields/33","display_name":"Social Sciences"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/national-library-of-medicine","display_name":"National Library of Medicine","score":0.8550000190734863},{"id":"https://openalex.org/keywords/newborn-screening","display_name":"newborn screening","score":0.8600000143051147},{"id":"https://openalex.org/keywords/rare-genetic-disorders","display_name":"rare genetic disorders","score":0.8809999823570251},{"id":"https://openalex.org/keywords/phenylketonuria","display_name":"phenylketonuria","score":0.8429999947547913},{"id":"https://openalex.org/keywords/medlineplus","display_name":"MedlinePlus","score":0.7559999823570251},{"id":"https://openalex.org/keywords/clinicaltrials-gov","display_name":"ClinicalTrials.gov","score":0.9750000238418579},{"id":"https://openalex.org/keywords/pubmed","display_name":"PubMed","score":0.9810000061988831},{"id":"https://openalex.org/keywords/health-information-websites","display_name":"health information websites","score":0.6169999837875366},{"id":"https://openalex.org/keywords/patient-education","display_name":"patient education","score":0.6600000262260437},{"id":"https://openalex.org/keywords/parents","display_name":"parents","score":0.44999998807907104},{"id":"https://openalex.org/keywords/healthcare-workers","display_name":"healthcare workers","score":0.49900001287460327}],"concepts":[{"id":"https://openalex.org/C110875604","wikidata":"https://www.wikidata.org/wiki/Q75","display_name":"The Internet","level":2,"score":0.6869734525680542},{"id":"https://openalex.org/C2776169613","wikidata":"https://www.wikidata.org/wiki/Q2305910","display_name":"Newborn screening","level":2,"score":0.5732134580612183},{"id":"https://openalex.org/C2994543612","wikidata":"https://www.wikidata.org/wiki/Q22806","display_name":"National library","level":2,"score":0.5447578430175781},{"id":"https://openalex.org/C138816342","wikidata":"https://www.wikidata.org/wiki/Q189603","display_name":"Public health","level":2,"score":0.5226162075996399},{"id":"https://openalex.org/C547764534","wikidata":"https://www.wikidata.org/wiki/Q8236","display_name":"Literacy","level":2,"score":0.510739803314209},{"id":"https://openalex.org/C2779473830","wikidata":"https://www.wikidata.org/wiki/Q1540899","display_name":"MEDLINE","level":2,"score":0.47268038988113403},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.472024142742157},{"id":"https://openalex.org/C509550671","wikidata":"https://www.wikidata.org/wiki/Q126945","display_name":"Medical education","level":1,"score":0.45796918869018555},{"id":"https://openalex.org/C3019806175","wikidata":"https://www.wikidata.org/wiki/Q11974939","display_name":"Health professionals","level":3,"score":0.43105366826057434},{"id":"https://openalex.org/C512399662","wikidata":"https://www.wikidata.org/wiki/Q3505712","display_name":"Family medicine","level":1,"score":0.3607940673828125},{"id":"https://openalex.org/C160735492","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Health care","level":2,"score":0.30877596139907837},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.2848535478115082},{"id":"https://openalex.org/C136764020","wikidata":"https://www.wikidata.org/wiki/Q466","display_name":"World Wide Web","level":1,"score":0.2778375744819641},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.2508527338504791},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.2408265471458435},{"id":"https://openalex.org/C161191863","wikidata":"https://www.wikidata.org/wiki/Q199655","display_name":"Library science","level":1,"score":0.22146758437156677},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.14630019664764404},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.14148759841918945},{"id":"https://openalex.org/C19417346","wikidata":"https://www.wikidata.org/wiki/Q7922","display_name":"Pedagogy","level":1,"score":0.0},{"id":"https://openalex.org/C199539241","wikidata":"https://www.wikidata.org/wiki/Q7748","display_name":"Law","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D005820","descriptor_name":"Genetic Testing","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D006266","descriptor_name":"Health Education","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D007231","descriptor_name":"Infant, Newborn","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D008607","descriptor_name":"Intellectual Disability","qualifier_ui":"Q000209","qualifier_name":"etiology","is_major_topic":false},{"descriptor_ui":"D008607","descriptor_name":"Intellectual Disability","qualifier_ui":"Q000235","qualifier_name":"genetics","is_major_topic":false},{"descriptor_ui":"D008607","descriptor_name":"Intellectual Disability","qualifier_ui":"Q000517","qualifier_name":"prevention & control","is_major_topic":false},{"descriptor_ui":"D009317","descriptor_name":"National Library of Medicine (U.S.)","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D010661","descriptor_name":"Phenylketonurias","qualifier_ui":"Q000175","qualifier_name":"diagnosis","is_major_topic":false},{"descriptor_ui":"D012984","descriptor_name":"Software","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D014481","descriptor_name":"United States","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D015997","descriptor_name":"Neonatal Screening","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D019212","descriptor_name":"Multimedia","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D020407","descriptor_name":"Internet","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D049293","descriptor_name":"MedlinePlus","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false}],"locations_count":3,"locations":[{"id":"doi:10.1002/mrdd.20125","doi":"https://doi.org/10.1002/mrdd.20125","is_oa":false,"landing_page_url":"https://doi.org/10.1002/mrdd.20125","pdf_url":null,"source":{"id":"https://openalex.org/S160629904","display_name":"Mental Retardation and Developmental Disabilities Research Reviews","issn_l":"1080-4013","issn":["1080-4013","1098-2779"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core"],"host_organization":"https://openalex.org/P4310320595","host_organization_name":"Wiley","host_organization_lineage":["https://openalex.org/P4310320595"],"host_organization_lineage_names":["Wiley"],"type":"journal"},"license":"public-domain","license_id":"https://openalex.org/licenses/public-domain","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Mental Retardation and Developmental Disabilities Research Reviews","raw_type":"journal-article"},{"id":"pmid:17183579","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/17183579","pdf_url":null,"source":{"id":"https://openalex.org/S4306525036","display_name":"PubMed","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Mental retardation and developmental disabilities research reviews","raw_type":"Journal Article"},{"id":"pmh:oai:CiteSeerX.psu:10.1.1.63.2671","doi":null,"is_oa":false,"landing_page_url":"http://citeseerx.ist.psu.edu/viewdoc/summary?doi=10.1.1.63.2671","pdf_url":null,"source":null,"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"http://lhncbc.nlm.nih.gov/lhc/docs/published/2006/pub2006062.pdf","raw_type":"text"}],"best_oa_location":null,"sustainable_development_goals":[],"study_designs":[],"awards":[],"funders":[{"id":"https://openalex.org/F4320332175","display_name":"Health Resources and Services Administration","ror":"https://ror.org/033jnv181"}],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":13,"referenced_works":["https://openalex.org/W1568454412","https://openalex.org/W1766434026","https://openalex.org/W1854322606","https://openalex.org/W2005302224","https://openalex.org/W2034627321","https://openalex.org/W2099281729","https://openalex.org/W2119412782","https://openalex.org/W2133419842","https://openalex.org/W2146962585","https://openalex.org/W2155793022","https://openalex.org/W2183771419","https://openalex.org/W4240002127","https://openalex.org/W4250074752"],"related_works":["https://openalex.org/W2083097771","https://openalex.org/W3122204455","https://openalex.org/W2035084452","https://openalex.org/W7042985628","https://openalex.org/W2979442031","https://openalex.org/W7218281574","https://openalex.org/W4280498811","https://openalex.org/W1902439706","https://openalex.org/W2762988871","https://openalex.org/W4391855393"],"abstract_inverted_index":{"Expanded":[0],"newborn":[1,81],"screening":[2,82],"programs":[3],"and":[4,13,22,92,105,134,149,156],"subsequent":[5],"detection":[6],"of":[7,24,49,62,67,71,80,109,114],"rare":[8],"genetic":[9],"disorders":[10],"challenge":[11],"parents":[12,133],"their":[14,135],"medical":[15,30,136],"providers":[16,137],"to":[17,52,119],"learn":[18],"about":[19],"the":[20,33,68,78,130,146,151],"treatment":[21],"management":[23],"these":[25],"disorders.":[26],"Many":[27],"people":[28],"seek":[29],"information":[31,110,131],"on":[32],"Internet":[34],"but":[35],"may":[36],"encounter":[37],"requests":[38],"for":[39,111],"registration":[40,102],"or":[41,43,54,103],"fees,":[42,104],"find":[44,139],"that":[45,76,132],"resources":[46,75,85],"are":[47,96],"out":[48],"date,":[50],"difficult":[51],"understand,":[53],"buried":[55],"in":[56],"advertisements.":[57],"The":[58],"U.S.":[59],"National":[60,69],"Library":[61],"Medicine":[63],"(NLM),":[64],"a":[65,112],"component":[66],"Institutes":[70],"Health,":[72],"provides":[73,150],"web-based":[74],"address":[77],"challenges":[79],"education.":[83],"These":[84],"include":[86],"MedlinePlus,":[87],"Genetics":[88],"Home":[89],"Reference,":[90],"ClinicalTrials.gov,":[91],"PubMed.":[93],"NLM":[94,141,143],"websites":[95],"not":[97,100],"commercial,":[98],"do":[99],"require":[101],"provide":[106],"varied":[107],"levels":[108],"continuum":[113],"audiences":[115],"from":[116],"low-literacy":[117],"consumers":[118],"health":[120],"professionals.":[121],"Using":[122],"phenylketonuria":[123],"as":[124],"an":[125],"example,":[126],"this":[127],"study":[128],"describes":[129],"can":[138],"through":[140],"resources.":[142],"has":[144],"embraced":[145],"digital":[147],"age":[148],"public":[152],"with":[153],"reliable,":[154],"accurate,":[155],"up-to-date":[157],"educational":[158],"materials.":[159]},"counts_by_year":[{"year":2023,"cited_by_count":1}],"updated_date":"2026-11-04T10:54:05.112534","created_date":"2016-06-24T00:00:00"}