{"id":"https://openalex.org/W2407967850","doi":"https://doi.org/10.4018/ijwp.2015010104","title":"Web Platform to Support the Portuguese National Registry of Haemophilia and Other Inherited Blood Disorders","display_name":"Web Platform to Support the Portuguese National Registry of Haemophilia and Other Inherited Blood Disorders","publication_year":2015,"publication_date":"2015-01-01","ids":{"openalex":"https://openalex.org/W2407967850","doi":"https://doi.org/10.4018/ijwp.2015010104","mag":"2407967850"},"language":"en","primary_location":{"id":"doi:10.4018/ijwp.2015010104","is_oa":false,"landing_page_url":"https://doi.org/10.4018/ijwp.2015010104","pdf_url":null,"source":{"id":"https://openalex.org/S141275348","display_name":"International Journal of Web Portals","issn_l":"1938-0194","issn":["1938-0194","1938-0208"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310320424","host_organization_name":"IGI Global","host_organization_lineage":["https://openalex.org/P4310320424"],"host_organization_lineage_names":["IGI Global"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"International Journal of Web Portals","raw_type":"journal-article"},"type":"article","indexed_in":["crossref"],"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/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":["IEETA/DEGEIT - University of Aveiro, Aveiro, Portugal"],"affiliations":[{"raw_affiliation_string":"IEETA/DEGEIT - University of Aveiro, 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":["DEGEIT - University of Aveiro, Aveiro, Portugal"],"affiliations":[{"raw_affiliation_string":"DEGEIT - University of Aveiro, Aveiro, Portugal","institution_ids":["https://openalex.org/I60858718"]}]},{"author_position":"middle","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":["IEETA/DEGEIT - University of Aveiro, Aveiro, Portugal"],"affiliations":[{"raw_affiliation_string":"IEETA/DEGEIT - University of Aveiro, Aveiro, Portugal","institution_ids":["https://openalex.org/I60858718"]}]},{"author_position":"last","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":["IEETA/DETI - University of Aveiro, Aveiro, Portugal"],"affiliations":[{"raw_affiliation_string":"IEETA/DETI - University of Aveiro, Aveiro, Portugal","institution_ids":["https://openalex.org/I60858718"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":4,"corresponding_author_ids":["https://openalex.org/A5031788880"],"corresponding_institution_ids":["https://openalex.org/I60858718"],"apc_list":null,"apc_paid":null,"fwci":0.2062,"has_fulltext":false,"cited_by_count":2,"citation_normalized_percentile":{"value":0.59848899,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":89,"max":94},"biblio":{"volume":"7","issue":"1","first_page":"65","last_page":"80"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11280","display_name":"Hemophilia Treatment and Research","score":0.9990000128746033,"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":0.9990000128746033,"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"}},{"id":"https://openalex.org/T10746","display_name":"Platelet Disorders and Treatments","score":0.9793000221252441,"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"}},{"id":"https://openalex.org/T12478","display_name":"Wikis in Education and Collaboration","score":0.9204000234603882,"subfield":{"id":"https://openalex.org/subfields/3315","display_name":"Communication"},"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/haemophilia","display_name":"Haemophilia","score":0.8495104312896729},{"id":"https://openalex.org/keywords/portuguese","display_name":"Portuguese","score":0.6846923828125},{"id":"https://openalex.org/keywords/web-application","display_name":"Web application","score":0.5993319153785706},{"id":"https://openalex.org/keywords/epidemiology","display_name":"Epidemiology","score":0.5253221988677979},{"id":"https://openalex.org/keywords/medicine","display_name":"Medicine","score":0.5193068385124207},{"id":"https://openalex.org/keywords/disease","display_name":"Disease","score":0.45497748255729675},{"id":"https://openalex.org/keywords/patient-registry","display_name":"Patient registry","score":0.4220314025878906},{"id":"https://openalex.org/keywords/world-wide-web","display_name":"World Wide Web","score":0.40868234634399414},{"id":"https://openalex.org/keywords/database","display_name":"Database","score":0.33591461181640625},{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.3259025812149048},{"id":"https://openalex.org/keywords/pediatrics","display_name":"Pediatrics","score":0.24399268627166748},{"id":"https://openalex.org/keywords/pathology","display_name":"Pathology","score":0.15305033326148987}],"concepts":[{"id":"https://openalex.org/C2778385053","wikidata":"https://www.wikidata.org/wiki/Q134003","display_name":"Haemophilia","level":2,"score":0.8495104312896729},{"id":"https://openalex.org/C35219183","wikidata":"https://www.wikidata.org/wiki/Q5146","display_name":"Portuguese","level":2,"score":0.6846923828125},{"id":"https://openalex.org/C118643609","wikidata":"https://www.wikidata.org/wiki/Q189210","display_name":"Web application","level":2,"score":0.5993319153785706},{"id":"https://openalex.org/C107130276","wikidata":"https://www.wikidata.org/wiki/Q133805","display_name":"Epidemiology","level":2,"score":0.5253221988677979},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.5193068385124207},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.45497748255729675},{"id":"https://openalex.org/C2908964109","wikidata":"https://www.wikidata.org/wiki/Q5282128","display_name":"Patient registry","level":2,"score":0.4220314025878906},{"id":"https://openalex.org/C136764020","wikidata":"https://www.wikidata.org/wiki/Q466","display_name":"World Wide Web","level":1,"score":0.40868234634399414},{"id":"https://openalex.org/C77088390","wikidata":"https://www.wikidata.org/wiki/Q8513","display_name":"Database","level":1,"score":0.33591461181640625},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.3259025812149048},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.24399268627166748},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.15305033326148987},{"id":"https://openalex.org/C41895202","wikidata":"https://www.wikidata.org/wiki/Q8162","display_name":"Linguistics","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}],"mesh":[],"locations_count":2,"locations":[{"id":"doi:10.4018/ijwp.2015010104","is_oa":false,"landing_page_url":"https://doi.org/10.4018/ijwp.2015010104","pdf_url":null,"source":{"id":"https://openalex.org/S141275348","display_name":"International Journal of Web Portals","issn_l":"1938-0194","issn":["1938-0194","1938-0208"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310320424","host_organization_name":"IGI Global","host_organization_lineage":["https://openalex.org/P4310320424"],"host_organization_lineage_names":["IGI Global"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"International Journal of Web Portals","raw_type":"journal-article"},{"id":"pmh:oai:RePEc:igg:jwp000:v:7:y:2015:i:1:p:65-80","is_oa":false,"landing_page_url":"http://services.igi-global.com/resolvedoi/resolve.aspx?doi=10.4018/IJWP.2015010104","pdf_url":null,"source":{"id":"https://openalex.org/S4306401271","display_name":"RePEc: Research Papers in Economics","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":"https://openalex.org/I77793887","host_organization_name":"Federal Reserve Bank of St. Louis","host_organization_lineage":["https://openalex.org/I77793887"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"","raw_type":"article"}],"best_oa_location":null,"sustainable_development_goals":[{"score":0.6499999761581421,"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3"}],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":23,"referenced_works":["https://openalex.org/W1104569","https://openalex.org/W175551733","https://openalex.org/W1552028621","https://openalex.org/W1594055048","https://openalex.org/W1868456113","https://openalex.org/W2013607072","https://openalex.org/W2016201035","https://openalex.org/W2044978727","https://openalex.org/W2047434089","https://openalex.org/W2064194152","https://openalex.org/W2066441952","https://openalex.org/W2076774655","https://openalex.org/W2123506079","https://openalex.org/W2124935535","https://openalex.org/W2126765395","https://openalex.org/W2129098413","https://openalex.org/W2139220283","https://openalex.org/W2222557866","https://openalex.org/W2246474004","https://openalex.org/W2294667769","https://openalex.org/W2398054045","https://openalex.org/W2503691547","https://openalex.org/W2916111088"],"related_works":["https://openalex.org/W2078332762","https://openalex.org/W1992568027","https://openalex.org/W2018385571","https://openalex.org/W3126916616","https://openalex.org/W2116705452","https://openalex.org/W2073309292","https://openalex.org/W4206553641","https://openalex.org/W1813325439","https://openalex.org/W2044978727","https://openalex.org/W2020235089"],"abstract_inverted_index":{"Patient":[0],"registries":[1],"are":[2,36],"essential":[3],"tools":[4],"for":[5,15],"identifying":[6],"and":[7,14,25,30,83,115],"tracking":[8],"people":[9],"with":[10,89,100,135],"a":[11,20,72],"particular":[12],"disease":[13,62],"collecting":[16],"epidemiological":[17],"information,":[18],"having":[19],"special":[21],"role":[22],"in":[23,58,71,102,108,133,142],"rare":[24],"chronic":[26],"diseases,":[27],"where":[28],"haemophilia":[29],"other":[31],"inherited":[32],"blood":[33],"disorders":[34],"(HoIBD)":[35],"classified.":[37],"Web-based":[38],"technologies":[39],"represent":[40],"an":[41],"excellent":[42],"solution":[43],"to":[44,51],"support":[45],"different":[46,127],"types":[47],"of":[48,61,79,86,92,112,125,145],"registries,":[49],"due":[50],"the":[52,59,67,76,84,90,94,109,113,126,136,140,143],"benefits":[53],"that":[54],"they":[55],"can":[56],"promote":[57],"management":[60],"data.":[63],"This":[64,104],"work":[65],"presents":[66],"web":[68],"platform":[69],"developed":[70],"joint":[73],"initiative":[74],"between":[75],"Portuguese":[77],"Association":[78],"Congenital":[80],"Coagulopathies":[81],"(PACC)":[82],"University":[85],"Aveiro":[87],"(UA),":[88],"purpose":[91],"creating":[93],"first":[95],"National":[96],"Patients":[97],"Registry":[98],"(NPR)":[99],"HoIBD":[101],"Portugal.":[103],"application":[105],"is":[106,120],"hosted":[107],"data":[110],"centre":[111],"UA,":[114],"at":[116],"this":[117],"moment":[118],"it":[119],"already":[121],"used":[122],"by":[123],"clinicians":[124],"Haemophilia":[128],"Treatment":[129],"Centres":[130],"(HTC)":[131],"located":[132],"Portugal,":[134],"next":[137],"challenge":[138],"being":[139],"increase":[141],"number":[144],"users.":[146]},"counts_by_year":[{"year":2021,"cited_by_count":1},{"year":2017,"cited_by_count":1}],"updated_date":"2025-11-06T03:46:38.306776","created_date":"2025-10-10T00:00:00"}