{"id":"https://openalex.org/W1663118874","doi":"https://doi.org/10.1016/j.procs.2015.08.507","title":"The Portuguese National Registry for Hemophilia: Developing of a Web-based Technological Solution","display_name":"The Portuguese National Registry for Hemophilia: Developing of a Web-based Technological Solution","publication_year":2015,"publication_date":"2015-01-01","ids":{"openalex":"https://openalex.org/W1663118874","doi":"https://doi.org/10.1016/j.procs.2015.08.507","mag":"1663118874"},"language":"en","primary_location":{"is_oa":true,"landing_page_url":"https://doi.org/10.1016/j.procs.2015.08.507","pdf_url":null,"source":{"id":"https://openalex.org/S120348307","display_name":"Procedia Computer Science","issn_l":"1877-0509","issn":["1877-0509"],"is_oa":true,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true},"type":"article","type_crossref":"journal-article","indexed_in":["crossref"],"open_access":{"is_oa":true,"oa_status":"gold","oa_url":"https://doi.org/10.1016/j.procs.2015.08.507","any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5031788880","display_name":"Leonor Teixeira","orcid":"https://orcid.org/0000-0002-7791-1932"},"institutions":[{"id":"https://openalex.org/I60858718","display_name":"University of Aveiro","ror":"https://ror.org/00nt41z93","country_code":"PT","type":"education","lineage":["https://openalex.org/I60858718"]}],"countries":["PT"],"is_corresponding":true,"raw_author_name":"Leonor Teixeira","raw_affiliation_strings":["Department of Economics, Management and Industrial Engineering, University of Aveiro, 3810-193 Aveiro, Portugal","IEETA - Institute of Telematics and Electronic Engineering of Aveiro, University of Aveiro, 3810-193 Aveiro, Portugal"],"affiliations":[{"raw_affiliation_string":"IEETA - Institute of Telematics and Electronic Engineering of Aveiro, University of Aveiro, 3810-193 Aveiro, Portugal","institution_ids":["https://openalex.org/I60858718"]},{"raw_affiliation_string":"Department of Economics, Management and Industrial Engineering, University of Aveiro, 3810-193 Aveiro, Portugal","institution_ids":["https://openalex.org/I60858718"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5038706231","display_name":"Vasco Saavedra","orcid":"https://orcid.org/0000-0002-1302-8286"},"institutions":[{"id":"https://openalex.org/I60858718","display_name":"University of Aveiro","ror":"https://ror.org/00nt41z93","country_code":"PT","type":"education","lineage":["https://openalex.org/I60858718"]}],"countries":["PT"],"is_corresponding":false,"raw_author_name":"Vasco Saavedra","raw_affiliation_strings":["Department of Economics, Management and Industrial Engineering, University of Aveiro, 3810-193 Aveiro, Portugal"],"affiliations":[{"raw_affiliation_string":"Department of Economics, Management and Industrial Engineering, University of Aveiro, 3810-193 Aveiro, Portugal","institution_ids":["https://openalex.org/I60858718"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5112366209","display_name":"Joao Simoes","orcid":null},"institutions":[],"countries":["PT"],"is_corresponding":false,"raw_author_name":"Jo\u00e3o Pedro Sim\u00f5es","raw_affiliation_strings":["Truphone, Lisbon, 2740-120 Oeiras, Portugal"],"affiliations":[{"raw_affiliation_string":"Truphone, Lisbon, 2740-120 Oeiras, Portugal","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5026656653","display_name":"Beatriz Sousa Santos","orcid":"https://orcid.org/0000-0002-2219-2731"},"institutions":[{"id":"https://openalex.org/I60858718","display_name":"University of Aveiro","ror":"https://ror.org/00nt41z93","country_code":"PT","type":"education","lineage":["https://openalex.org/I60858718"]}],"countries":["PT"],"is_corresponding":false,"raw_author_name":"Beatriz Sousa Santos","raw_affiliation_strings":["Department of Electronics, Telecommunications and Informatics, University of Aveiro, 3810-193 Aveiro, Portugal","IEETA - Institute of Telematics and Electronic Engineering of Aveiro, University of Aveiro, 3810-193 Aveiro, Portugal"],"affiliations":[{"raw_affiliation_string":"Department of Electronics, Telecommunications and Informatics, University of Aveiro, 3810-193 Aveiro, Portugal","institution_ids":["https://openalex.org/I60858718"]},{"raw_affiliation_string":"IEETA - Institute of Telematics and Electronic Engineering of Aveiro, University of Aveiro, 3810-193 Aveiro, Portugal","institution_ids":["https://openalex.org/I60858718"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5107171727","display_name":"Carlos Ferreira","orcid":"https://orcid.org/0000-0002-2799-643X"},"institutions":[{"id":"https://openalex.org/I60858718","display_name":"University of Aveiro","ror":"https://ror.org/00nt41z93","country_code":"PT","type":"education","lineage":["https://openalex.org/I60858718"]}],"countries":["PT"],"is_corresponding":false,"raw_author_name":"Carlos Ferreira","raw_affiliation_strings":["Department of Economics, Management and Industrial Engineering, University of Aveiro, 3810-193 Aveiro, Portugal","IEETA - Institute of Telematics and Electronic Engineering of Aveiro, University of Aveiro, 3810-193 Aveiro, Portugal"],"affiliations":[{"raw_affiliation_string":"IEETA - Institute of Telematics and Electronic Engineering of Aveiro, University of Aveiro, 3810-193 Aveiro, Portugal","institution_ids":["https://openalex.org/I60858718"]},{"raw_affiliation_string":"Department of Economics, Management and Industrial Engineering, University of Aveiro, 3810-193 Aveiro, Portugal","institution_ids":["https://openalex.org/I60858718"]}]}],"institution_assertions":[],"countries_distinct_count":1,"institutions_distinct_count":1,"corresponding_author_ids":["https://openalex.org/A5031788880"],"corresponding_institution_ids":["https://openalex.org/I60858718"],"apc_list":null,"apc_paid":null,"fwci":0.225,"has_fulltext":true,"fulltext_origin":"ngrams","cited_by_count":3,"citation_normalized_percentile":{"value":0.652456,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":76,"max":79},"biblio":{"volume":"64","issue":null,"first_page":"1248","last_page":"1255"},"is_retracted":false,"is_paratext":false,"primary_topic":{"id":"https://openalex.org/T11280","display_name":"Hemophilia Treatment and Research","score":0.9988,"subfield":{"id":"https://openalex.org/subfields/2720","display_name":"Hematology"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T11280","display_name":"Hemophilia Treatment and Research","score":0.9988,"subfield":{"id":"https://openalex.org/subfields/2720","display_name":"Hematology"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/identification","display_name":"Identification","score":0.41245112}],"concepts":[{"id":"https://openalex.org/C35219183","wikidata":"https://www.wikidata.org/wiki/Q5146","display_name":"Portuguese","level":2,"score":0.6272134},{"id":"https://openalex.org/C18762648","wikidata":"https://www.wikidata.org/wiki/Q42213","display_name":"Work (physics)","level":2,"score":0.47575113},{"id":"https://openalex.org/C2908647359","wikidata":"https://www.wikidata.org/wiki/Q2625603","display_name":"Population","level":2,"score":0.4471036},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.444314},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.4245203},{"id":"https://openalex.org/C116834253","wikidata":"https://www.wikidata.org/wiki/Q2039217","display_name":"Identification (biology)","level":2,"score":0.41245112},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.40120405},{"id":"https://openalex.org/C545542383","wikidata":"https://www.wikidata.org/wiki/Q2751242","display_name":"Medical emergency","level":1,"score":0.33224568},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.3262423},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.13875988},{"id":"https://openalex.org/C99454951","wikidata":"https://www.wikidata.org/wiki/Q932068","display_name":"Environmental health","level":1,"score":0.13832894},{"id":"https://openalex.org/C78519656","wikidata":"https://www.wikidata.org/wiki/Q101333","display_name":"Mechanical engineering","level":1,"score":0.0},{"id":"https://openalex.org/C138885662","wikidata":"https://www.wikidata.org/wiki/Q5891","display_name":"Philosophy","level":0,"score":0.0},{"id":"https://openalex.org/C41895202","wikidata":"https://www.wikidata.org/wiki/Q8162","display_name":"Linguistics","level":1,"score":0.0},{"id":"https://openalex.org/C59822182","wikidata":"https://www.wikidata.org/wiki/Q441","display_name":"Botany","level":1,"score":0.0},{"id":"https://openalex.org/C127413603","wikidata":"https://www.wikidata.org/wiki/Q11023","display_name":"Engineering","level":0,"score":0.0},{"id":"https://openalex.org/C86803240","wikidata":"https://www.wikidata.org/wiki/Q420","display_name":"Biology","level":0,"score":0.0}],"mesh":[],"locations_count":1,"locations":[{"is_oa":true,"landing_page_url":"https://doi.org/10.1016/j.procs.2015.08.507","pdf_url":null,"source":{"id":"https://openalex.org/S120348307","display_name":"Procedia Computer Science","issn_l":"1877-0509","issn":["1877-0509"],"is_oa":true,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true}],"best_oa_location":{"is_oa":true,"landing_page_url":"https://doi.org/10.1016/j.procs.2015.08.507","pdf_url":null,"source":{"id":"https://openalex.org/S120348307","display_name":"Procedia Computer Science","issn_l":"1877-0509","issn":["1877-0509"],"is_oa":true,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true},"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/17","display_name":"Partnerships for the goals","score":0.49}],"grants":[],"datasets":[],"versions":[],"referenced_works_count":12,"referenced_works":["https://openalex.org/W1104569","https://openalex.org/W1552028621","https://openalex.org/W1594055048","https://openalex.org/W1868456113","https://openalex.org/W2013607072","https://openalex.org/W2016201035","https://openalex.org/W2064194152","https://openalex.org/W2066441952","https://openalex.org/W2124935535","https://openalex.org/W2126765395","https://openalex.org/W2398054045","https://openalex.org/W4246166035"],"related_works":["https://openalex.org/W581688671","https://openalex.org/W563704311","https://openalex.org/W4322721676","https://openalex.org/W4299785812","https://openalex.org/W2912615426","https://openalex.org/W2899467429","https://openalex.org/W2625894112","https://openalex.org/W2104166387","https://openalex.org/W1990120252","https://openalex.org/W1964944391"],"abstract_inverted_index":{"The":[0],"crucial":[1],"role":[2],"that":[3,47],"patient":[4],"records":[5],"have":[6],"in":[7,87,100,128,135],"the":[8,11,18,25,30,49,71,88,91,96,105,111,119,123,136,140,149,152,159],"management":[9,28,89],"of":[10,29,44,54,76,90,107,114,121,139,142,151],"rare":[12],"and":[13,27,78,110,144],"chronic":[14],"diseases":[15],"greatly":[16],"increases":[17],"need":[19],"to":[20,23,69,84],"create":[21],"mechanisms":[22],"facilitate":[24],"identification":[26],"patient's":[31],"data.":[32],"Hemophilia":[33,77,154],"is":[34,133,145],"an":[35],"X-linked":[36],"congenital":[37],"bleeding":[38],"disorder":[39],"caused":[40],"by":[41,148],"a":[42,52,101],"deficiency":[43],"coagulation":[45],"factor":[46],"affects":[48],"population":[50],"on":[51],"ratio":[53],"1":[55],"case":[56],"for":[57],"10,000":[58],"people":[59],"born.":[60],"Currently,":[61],"there":[62],"are":[63],"several":[64],"countries":[65],"with":[66,118,126],"technological":[67,97],"platforms":[68],"support":[70],"National":[72],"Patients'":[73],"Registries":[74],"(NPR)":[75],"other":[79],"Congenital":[80,115],"Coagulopathies":[81,116],"(HoCC),":[82],"due":[83],"its":[85],"benefits":[86],"disease.":[92],"This":[93,130],"work":[94],"presents":[95],"platform":[98],"developed":[99],"joint":[102],"initiative":[103],"between":[104],"University":[106,141],"Aveiro":[108],"(UA)":[109],"Portuguese":[112],"Association":[113],"(PACC),":[117],"purpose":[120],"creating":[122],"first":[124],"NPR":[125],"HoCC":[127],"Portugal.":[129],"web":[131],"application":[132],"hosted":[134],"data":[137],"center":[138],"Aveiro,":[143],"being":[146],"used":[147],"clinicians":[150],"different":[153],"Treatment":[155],"Centers":[156],"(HTC)":[157],"across":[158],"country.":[160]},"cited_by_api_url":"https://api.openalex.org/works?filter=cites:W1663118874","counts_by_year":[{"year":2021,"cited_by_count":1},{"year":2020,"cited_by_count":1},{"year":2017,"cited_by_count":1}],"updated_date":"2025-01-09T06:12:07.013097","created_date":"2016-06-24"}