{"id":"https://openalex.org/W7133223584","doi":"https://doi.org/10.1186/s12911-025-03153-x","title":"Sharing EHR data of patients with rare diseases for research - The role of quality assessments in a national federated research data infrastructure","display_name":"Sharing EHR data of patients with rare diseases for research - The role of quality assessments in a national federated research data infrastructure","publication_year":2026,"publication_date":"2026-03-02","ids":{"openalex":"https://openalex.org/W7133223584","doi":"https://doi.org/10.1186/s12911-025-03153-x","pmid":"https://pubmed.ncbi.nlm.nih.gov/41772550"},"language":"en","primary_location":{"id":"doi:10.1186/s12911-025-03153-x","is_oa":true,"landing_page_url":"https://doi.org/10.1186/s12911-025-03153-x","pdf_url":"https://link.springer.com/content/pdf/10.1186/s12911-025-03153-x.pdf","source":{"id":"https://openalex.org/S107516304","display_name":"BMC Medical Informatics and Decision Making","issn_l":"1472-6947","issn":["1472-6947"],"is_oa":true,"is_in_doaj":true,"is_core":true,"host_organization":"https://openalex.org/P4310320256","host_organization_name":"BioMed Central","host_organization_lineage":["https://openalex.org/P4310320256","https://openalex.org/P4310319965"],"host_organization_lineage_names":["BioMed Central","Springer Nature"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"BMC Medical Informatics and Decision Making","raw_type":"journal-article"},"type":"article","indexed_in":["crossref","doaj","pubmed"],"open_access":{"is_oa":true,"oa_status":"gold","oa_url":"https://link.springer.com/content/pdf/10.1186/s12911-025-03153-x.pdf","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5125999932","display_name":"Kais Tahar","orcid":null},"institutions":[{"id":"https://openalex.org/I4210138551","display_name":"University Hospital Magdeburg","ror":"https://ror.org/03m04df46","country_code":"DE","type":"healthcare","lineage":["https://openalex.org/I4210138551"]},{"id":"https://openalex.org/I74656192","display_name":"University of G\u00f6ttingen","ror":"https://ror.org/01y9bpm73","country_code":"DE","type":"education","lineage":["https://openalex.org/I74656192"]}],"countries":["DE"],"is_corresponding":true,"raw_author_name":"Kais Tahar","raw_affiliation_strings":["Department of Medical Informatics, University Medical Center G\u00f6ttingen, Georg-August-University, 37075, G\u00f6ttingen, Germany. Kais.Tahar@med.ovgu.de","Institute for Public Health in Acute Medicine, University Medicine Magdeburg, Magdeburg, Germany. Kais.Tahar@med.ovgu.de"],"raw_orcid":"https://orcid.org/0000-0001-9683-0575","affiliations":[{"raw_affiliation_string":"Department of Medical Informatics, University Medical Center G\u00f6ttingen, Georg-August-University, 37075, G\u00f6ttingen, Germany. Kais.Tahar@med.ovgu.de","institution_ids":["https://openalex.org/I74656192"]},{"raw_affiliation_string":"Institute for Public Health in Acute Medicine, University Medicine Magdeburg, Magdeburg, Germany. Kais.Tahar@med.ovgu.de","institution_ids":["https://openalex.org/I4210138551"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5033128777","display_name":"Raphael Verbuecheln","orcid":null},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Raphael Verbuecheln","raw_affiliation_strings":["Medical Data Integration Center, University Hospital T\u00fcbingen, T\u00fcbingen, Germany"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Medical Data Integration Center, University Hospital T\u00fcbingen, T\u00fcbingen, Germany","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5127870866","display_name":"Tamara Martin","orcid":null},"institutions":[{"id":"https://openalex.org/I4210125796","display_name":"University Children's Hospital T\u00fcbingen","ror":"https://ror.org/03esvmb28","country_code":"DE","type":"healthcare","lineage":["https://openalex.org/I4210094118","https://openalex.org/I4210125796"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Tamara Martin","raw_affiliation_strings":["Centre for Rare Diseases, University Hospital T\u00fcbingen, T\u00fcbingen, Germany"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Centre for Rare Diseases, University Hospital T\u00fcbingen, T\u00fcbingen, Germany","institution_ids":["https://openalex.org/I4210125796"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5122078135","display_name":"Holm Graessner","orcid":null},"institutions":[{"id":"https://openalex.org/I4210125796","display_name":"University Children's Hospital T\u00fcbingen","ror":"https://ror.org/03esvmb28","country_code":"DE","type":"healthcare","lineage":["https://openalex.org/I4210094118","https://openalex.org/I4210125796"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Holm Graessner","raw_affiliation_strings":["Centre for Rare Diseases, University Hospital T\u00fcbingen, T\u00fcbingen, Germany"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Centre for Rare Diseases, University Hospital T\u00fcbingen, T\u00fcbingen, Germany","institution_ids":["https://openalex.org/I4210125796"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5014530494","display_name":"Stephanie Biergans","orcid":"https://orcid.org/0000-0002-0120-1301"},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Stephanie Biergans","raw_affiliation_strings":["Medical Data Integration Center, University Hospital T\u00fcbingen, T\u00fcbingen, Germany"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Medical Data Integration Center, University Hospital T\u00fcbingen, T\u00fcbingen, Germany","institution_ids":[]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5124293896","display_name":"D. Krefting","orcid":null},"institutions":[{"id":"https://openalex.org/I74656192","display_name":"University of G\u00f6ttingen","ror":"https://ror.org/01y9bpm73","country_code":"DE","type":"education","lineage":["https://openalex.org/I74656192"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Dagmar Krefting","raw_affiliation_strings":["Department of Medical Informatics, University Medical Center G\u00f6ttingen, Georg-August-University, 37075, G\u00f6ttingen, Germany"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Medical Informatics, University Medical Center G\u00f6ttingen, Georg-August-University, 37075, G\u00f6ttingen, Germany","institution_ids":["https://openalex.org/I74656192"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":3,"corresponding_author_ids":["https://openalex.org/A5125999932"],"corresponding_institution_ids":["https://openalex.org/I4210138551","https://openalex.org/I74656192"],"apc_list":{"value":2690,"currency":"USD","value_usd":2690},"apc_paid":{"value":2690,"currency":"USD","value_usd":2690},"fwci":0.0,"has_fulltext":true,"cited_by_count":0,"citation_normalized_percentile":{"value":0.20850776,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":"26","issue":"1","first_page":null,"last_page":null},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11642","display_name":"Genomics and Rare Diseases","score":0.5803999900817871,"subfield":{"id":"https://openalex.org/subfields/1311","display_name":"Genetics"},"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"}},"topics":[{"id":"https://openalex.org/T11642","display_name":"Genomics and Rare Diseases","score":0.5803999900817871,"subfield":{"id":"https://openalex.org/subfields/1311","display_name":"Genetics"},"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/T11937","display_name":"Research Data Management Practices","score":0.14749999344348907,"subfield":{"id":"https://openalex.org/subfields/1710","display_name":"Information Systems"},"field":{"id":"https://openalex.org/fields/17","display_name":"Computer Science"},"domain":{"id":"https://openalex.org/domains/3","display_name":"Physical Sciences"}},{"id":"https://openalex.org/T10350","display_name":"Electronic Health Records Systems","score":0.11649999767541885,"subfield":{"id":"https://openalex.org/subfields/3605","display_name":"Health Information Management"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/health-informatics","display_name":"Health informatics","score":0.6707000136375427},{"id":"https://openalex.org/keywords/data-quality","display_name":"Data quality","score":0.5325999855995178},{"id":"https://openalex.org/keywords/informatics","display_name":"Informatics","score":0.4535999894142151},{"id":"https://openalex.org/keywords/data-sharing","display_name":"Data sharing","score":0.43540000915527344},{"id":"https://openalex.org/keywords/usable","display_name":"USable","score":0.4277999997138977},{"id":"https://openalex.org/keywords/identification","display_name":"Identification (biology)","score":0.39660000801086426},{"id":"https://openalex.org/keywords/quality-assurance","display_name":"Quality assurance","score":0.39079999923706055},{"id":"https://openalex.org/keywords/quality","display_name":"Quality (philosophy)","score":0.3596000075340271},{"id":"https://openalex.org/keywords/data-collection","display_name":"Data collection","score":0.34700000286102295}],"concepts":[{"id":"https://openalex.org/C145642194","wikidata":"https://www.wikidata.org/wiki/Q870895","display_name":"Health informatics","level":3,"score":0.6707000136375427},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.5928000211715698},{"id":"https://openalex.org/C24756922","wikidata":"https://www.wikidata.org/wiki/Q1757694","display_name":"Data quality","level":3,"score":0.5325999855995178},{"id":"https://openalex.org/C191630685","wikidata":"https://www.wikidata.org/wiki/Q4027615","display_name":"Informatics","level":2,"score":0.4535999894142151},{"id":"https://openalex.org/C2779965156","wikidata":"https://www.wikidata.org/wiki/Q5227350","display_name":"Data sharing","level":3,"score":0.43540000915527344},{"id":"https://openalex.org/C2780615836","wikidata":"https://www.wikidata.org/wiki/Q2471869","display_name":"USable","level":2,"score":0.4277999997138977},{"id":"https://openalex.org/C2522767166","wikidata":"https://www.wikidata.org/wiki/Q2374463","display_name":"Data science","level":1,"score":0.4000999927520752},{"id":"https://openalex.org/C116834253","wikidata":"https://www.wikidata.org/wiki/Q2039217","display_name":"Identification (biology)","level":2,"score":0.39660000801086426},{"id":"https://openalex.org/C106436119","wikidata":"https://www.wikidata.org/wiki/Q836575","display_name":"Quality assurance","level":3,"score":0.39079999923706055},{"id":"https://openalex.org/C124101348","wikidata":"https://www.wikidata.org/wiki/Q172491","display_name":"Data mining","level":1,"score":0.3878999948501587},{"id":"https://openalex.org/C2779530757","wikidata":"https://www.wikidata.org/wiki/Q1207505","display_name":"Quality (philosophy)","level":2,"score":0.3596000075340271},{"id":"https://openalex.org/C133462117","wikidata":"https://www.wikidata.org/wiki/Q4929239","display_name":"Data collection","level":2,"score":0.34700000286102295},{"id":"https://openalex.org/C36503486","wikidata":"https://www.wikidata.org/wiki/Q11235244","display_name":"Domain (mathematical analysis)","level":2,"score":0.3386000096797943},{"id":"https://openalex.org/C195910791","wikidata":"https://www.wikidata.org/wiki/Q1324077","display_name":"Medical record","level":2,"score":0.3319999873638153},{"id":"https://openalex.org/C56666940","wikidata":"https://www.wikidata.org/wiki/Q788790","display_name":"Documentation","level":2,"score":0.3296999931335449},{"id":"https://openalex.org/C98045186","wikidata":"https://www.wikidata.org/wiki/Q205663","display_name":"Process (computing)","level":2,"score":0.3248000144958496},{"id":"https://openalex.org/C179518139","wikidata":"https://www.wikidata.org/wiki/Q5140297","display_name":"Coding (social sciences)","level":2,"score":0.3172000050544739},{"id":"https://openalex.org/C33762810","wikidata":"https://www.wikidata.org/wiki/Q461671","display_name":"Data integrity","level":2,"score":0.31369999051094055},{"id":"https://openalex.org/C17231256","wikidata":"https://www.wikidata.org/wiki/Q5156540","display_name":"Completeness (order theory)","level":2,"score":0.3012000024318695},{"id":"https://openalex.org/C158154518","wikidata":"https://www.wikidata.org/wiki/Q7310970","display_name":"Relevance (law)","level":2,"score":0.2838999927043915},{"id":"https://openalex.org/C72634772","wikidata":"https://www.wikidata.org/wiki/Q386824","display_name":"Data integration","level":2,"score":0.2777999937534332},{"id":"https://openalex.org/C198531522","wikidata":"https://www.wikidata.org/wiki/Q485146","display_name":"Sample (material)","level":2,"score":0.2721000015735626},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.2630000114440918},{"id":"https://openalex.org/C23123220","wikidata":"https://www.wikidata.org/wiki/Q816826","display_name":"Information retrieval","level":1,"score":0.2574999928474426},{"id":"https://openalex.org/C9357733","wikidata":"https://www.wikidata.org/wiki/Q6878417","display_name":"Missing data","level":2,"score":0.25699999928474426},{"id":"https://openalex.org/C71745522","wikidata":"https://www.wikidata.org/wiki/Q2476929","display_name":"Confidentiality","level":2,"score":0.2524999976158142}],"mesh":[{"descriptor_ui":"D000068598","descriptor_name":"Data Accuracy","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D005858","descriptor_name":"Germany","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D033181","descriptor_name":"Information Dissemination","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D035583","descriptor_name":"Rare Diseases","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D035843","descriptor_name":"Biomedical Research","qualifier_ui":"Q000592","qualifier_name":"standards","is_major_topic":true},{"descriptor_ui":"D057286","descriptor_name":"Electronic Health Records","qualifier_ui":"Q000592","qualifier_name":"standards","is_major_topic":true}],"locations_count":5,"locations":[{"id":"doi:10.1186/s12911-025-03153-x","is_oa":true,"landing_page_url":"https://doi.org/10.1186/s12911-025-03153-x","pdf_url":"https://link.springer.com/content/pdf/10.1186/s12911-025-03153-x.pdf","source":{"id":"https://openalex.org/S107516304","display_name":"BMC Medical Informatics and Decision Making","issn_l":"1472-6947","issn":["1472-6947"],"is_oa":true,"is_in_doaj":true,"is_core":true,"host_organization":"https://openalex.org/P4310320256","host_organization_name":"BioMed Central","host_organization_lineage":["https://openalex.org/P4310320256","https://openalex.org/P4310319965"],"host_organization_lineage_names":["BioMed Central","Springer Nature"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"BMC Medical Informatics and Decision Making","raw_type":"journal-article"},{"id":"pmid:41772550","is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/41772550","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,"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":"BMC medical informatics and decision making","raw_type":null},{"id":"pmh:oai:doaj.org/article:631d146cecc843428fb40f28709c144a","is_oa":true,"landing_page_url":"https://doaj.org/article/631d146cecc843428fb40f28709c144a","pdf_url":null,"source":{"id":"https://openalex.org/S4306401280","display_name":"DOAJ (DOAJ: Directory of Open Access Journals)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by-sa","license_id":"https://openalex.org/licenses/cc-by-sa","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"BMC Medical Informatics and Decision Making, Vol 26, Iss 1 (2026)","raw_type":"article"},{"id":"pmh:oai:publications.goettingen-research-online.de:2/164470","is_oa":true,"landing_page_url":"https://resolver.sub.uni-goettingen.de/purl?gro-2/164470","pdf_url":null,"source":{"id":"https://openalex.org/S4306401634","display_name":"GoeScholar  The Publication Server of the Georg-August-Universit\u00e4t G\u00f6ttingen (Georg-August-Universit\u00e4t G\u00f6ttingen)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":"https://openalex.org/I4210122495","host_organization_name":"Asklepios Klinik St. Georg","host_organization_lineage":["https://openalex.org/I4210122495"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"info:eu-repo/semantics/article"},{"id":"pmh:oai:pubmedcentral.nih.gov:12955070","is_oa":true,"landing_page_url":"https://pmc.ncbi.nlm.nih.gov/articles/PMC12955070/","pdf_url":null,"source":{"id":"https://openalex.org/S2764455111","display_name":"PubMed Central","issn_l":null,"issn":null,"is_oa":true,"is_in_doaj":false,"is_core":false,"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":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"BMC Med Inform Decis Mak","raw_type":"Text"}],"best_oa_location":{"id":"doi:10.1186/s12911-025-03153-x","is_oa":true,"landing_page_url":"https://doi.org/10.1186/s12911-025-03153-x","pdf_url":"https://link.springer.com/content/pdf/10.1186/s12911-025-03153-x.pdf","source":{"id":"https://openalex.org/S107516304","display_name":"BMC Medical Informatics and Decision Making","issn_l":"1472-6947","issn":["1472-6947"],"is_oa":true,"is_in_doaj":true,"is_core":true,"host_organization":"https://openalex.org/P4310320256","host_organization_name":"BioMed Central","host_organization_lineage":["https://openalex.org/P4310320256","https://openalex.org/P4310319965"],"host_organization_lineage_names":["BioMed Central","Springer Nature"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"BMC Medical Informatics and Decision Making","raw_type":"journal-article"},"sustainable_development_goals":[{"score":0.5676835179328918,"display_name":"Industry, innovation and infrastructure","id":"https://metadata.un.org/sdg/9"}],"awards":[],"funders":[],"has_content":{"grobid_xml":true,"pdf":true},"content_urls":{"pdf":"https://content.openalex.org/works/W7133223584.pdf","grobid_xml":"https://content.openalex.org/works/W7133223584.grobid-xml"},"referenced_works_count":29,"referenced_works":["https://openalex.org/W1567491469","https://openalex.org/W1971192989","https://openalex.org/W2076157564","https://openalex.org/W2121382432","https://openalex.org/W2126714363","https://openalex.org/W2158939484","https://openalex.org/W2164572080","https://openalex.org/W2302501749","https://openalex.org/W2518786827","https://openalex.org/W2765368691","https://openalex.org/W3006959221","https://openalex.org/W3016105827","https://openalex.org/W3018503624","https://openalex.org/W3068663359","https://openalex.org/W3082710250","https://openalex.org/W3113352959","https://openalex.org/W3121118501","https://openalex.org/W3139414905","https://openalex.org/W3164799942","https://openalex.org/W3188912472","https://openalex.org/W4212940012","https://openalex.org/W4291014950","https://openalex.org/W4306173528","https://openalex.org/W4307778264","https://openalex.org/W4377092318","https://openalex.org/W4390610606","https://openalex.org/W4396917645","https://openalex.org/W6888867516","https://openalex.org/W6930840787"],"related_works":[],"abstract_inverted_index":{"BACKGROUND:":[0],"To":[1],"obtain":[2],"sufficient":[3],"data":[4,43,80,92,97,180,248,353],"for":[5,52,131,285,311],"clinical":[6],"research":[7],"on":[8,15,82],"Rare":[9,16],"Diseases":[10],"(RDs),":[11],"the":[12,31,41,56,61,75,83,144,147,170,207,213,256,263,297,313,325,338,347],"project":[13],"\u201cCollaboration":[14],"Diseases\u201d":[17],"(CORD-MI)":[18],"has":[19],"connected":[20],"24":[21],"University":[22],"Medical":[23,33],"Centers":[24],"(UMCs)":[25],"in":[26,182,230,233,271,345],"Germany.":[27],"As":[28],"part":[29],"of":[30,44,64,72,78,95,128,146,227,266,296,303,315,342,351],"national":[32],"Informatics":[34],"Initiative":[35],"(MII),":[36],"which":[37],"aims":[38],"at":[39],"making":[40],"EHR":[42],"all":[45,267],"German":[46],"UMCs":[47],"FAIR":[48,184,294,352],"and":[49,58,74,101,159,190,203,216,250,328,340,349,356],"jointly":[50],"usable":[51],"research,":[53],"CORD-MI":[54],"extends":[55],"methods":[57],"tools":[59],"along":[60],"special":[62],"requirements":[63],"RD":[65,132,244,316],"data.":[66],"Major":[67],"challenges":[68],"are":[69,309,322],"insufficient":[70,110],"coding":[71],"RDs":[73],"high":[76,91,129],"influence":[77],"individual":[79],"records":[81],"results":[84,196],"due":[85,103],"to":[86,104,109,142,205,282,324],"low":[87],"cohort":[88],"sizes.":[89,112],"Hence,":[90],"quality":[93,105,314,348],"(DQ)":[94],"each":[96],"record":[98],"is":[99,127],"vital":[100],"exclusion":[102],"issues":[106,209,229,253,270,321],"may":[107,120],"lead":[108],"sample":[111],"DQ":[113,139,153,208,228,240,269],"deficiencies":[114],"induced":[115,254],"by":[116,186,200,255,287],"a":[117,137,183,191,224],"FAIRification":[118,149,257,332],"process":[119],"be":[121,277],"corrected":[122],"retrospectively;":[123],"therefore":[124],"their":[125],"identification":[126],"relevance":[130],"research.":[133],"METHODS:":[134],"We":[135,222,259],"used":[136],"self-developed":[138],"assessment":[140],"tool":[141],"investigate":[143],"impact":[145],"implemented":[148],"processes.":[150,258,333],"Seven":[151],"normalized":[152],"indicators":[154,308],"\u2013":[155,161],"encompassing":[156],"completeness,":[157],"uniqueness,":[158],"plausibility":[160],"were":[162,197,210,219],"assessed":[163],"automatically":[164],"across":[165],"two":[166,246],"datasets":[167],"created":[168],"from":[169,279,331],"same":[171],"patient":[172],"information":[173],"system":[174],"(PAS)":[175],"but":[176],"processed":[177],"differently:":[178],"claims":[179],"available":[181],"format":[185],"MII":[187],"standards":[188],"(FHIR-DS),":[189],"direct":[192],"export":[193],"(EXP-DS).":[194],"The":[195,273],"independently":[198],"validated":[199],"domain":[201],"experts,":[202],"measures":[204],"resolve":[206,262],"investigated.":[211],"Furthermore,":[212],"tool\u2019s":[214],"FAIRness":[215],"computational":[217],"performance":[218,275],"evaluated.":[220],"RESULTS:":[221],"found":[223],"higher":[225],"number":[226],"FHIR-DS":[231,236,286],"than":[232],"EXP-DS.":[234],"Specifically,":[235],"contained":[237],"1988":[238],"distinct":[239],"issues:":[241],"nine":[242],"ambiguous":[243],"cases,":[245],"missing":[247],"items,":[249],"1977":[251],"completeness":[252,326],"could":[260,276],"successfully":[261],"majority":[264],"(68%)":[265],"identified":[268,320],"FHIR-DS.":[272],"runtime":[274],"reduced":[278],"12.52":[280],"min":[281,284],"0.12":[283],"multi-core":[288],"parallelization.":[289],"A":[290],"comparison":[291],"with":[292,301],"current":[293],"guidelines":[295],"software":[298],"showed":[299],"compliance":[300],"16":[302],"17":[304],"principles.":[305],"CONCLUSION:":[306],"Completeness":[307],"crucial":[310],"evaluating":[312],"data,":[317],"as":[318],"most":[319],"related":[323],"dimension":[327],"largely":[329],"stem":[330],"Our":[334],"findings":[335],"have":[336],"shown":[337],"efficiency":[339],"effectiveness":[341],"our":[343],"methodology":[344],"improving":[346],"usefulness":[350],"both":[354],"retrospectively":[355],"prospectively.":[357],"CLINICAL":[358],"TRIAL":[359],"NUMBER:":[360],"Not":[361],"applicable.":[362]},"counts_by_year":[],"updated_date":"2026-07-23T08:03:31.855105","created_date":"2026-03-03T00:00:00"}
