{"id":"https://openalex.org/W2138278593","doi":"https://doi.org/10.1136/amiajnl-2012-001042","title":"An i2b2-based, generalizable, open source, self-scaling chronic disease registry","display_name":"An i2b2-based, generalizable, open source, self-scaling chronic disease registry","publication_year":2012,"publication_date":"2012-06-27","ids":{"openalex":"https://openalex.org/W2138278593","doi":"https://doi.org/10.1136/amiajnl-2012-001042","mag":"2138278593","pmid":"https://pubmed.ncbi.nlm.nih.gov/22733975"},"language":"en","primary_location":{"id":"doi:10.1136/amiajnl-2012-001042","is_oa":true,"landing_page_url":"https://doi.org/10.1136/amiajnl-2012-001042","pdf_url":"https://academic.oup.com/jamia/article-pdf/20/1/172/9517623/20-1-172.pdf","source":{"id":"https://openalex.org/S129839026","display_name":"Journal of the American Medical Informatics Association","issn_l":"1067-5027","issn":["1067-5027","1527-974X"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310311648","host_organization_name":"Oxford University Press","host_organization_lineage":["https://openalex.org/P4310311648","https://openalex.org/P4310311647"],"host_organization_lineage_names":["Oxford University Press","University of Oxford"],"type":"journal"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of the American Medical Informatics Association","raw_type":"journal-article"},"type":"article","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"hybrid","oa_url":"https://academic.oup.com/jamia/article-pdf/20/1/172/9517623/20-1-172.pdf","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5050322352","display_name":"Marc D. Natter","orcid":"https://orcid.org/0000-0003-0748-2674"},"institutions":[{"id":"https://openalex.org/I1288882113","display_name":"Boston Children's Hospital","ror":"https://ror.org/00dvg7y05","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1288882113"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"M. D. Natter","raw_affiliation_strings":["Children's Hospital Informatics Program at Harvard-MIT Health Sciences and Technology, Children's Hospital Boston, Boston, MA 02115, USA. marc.natter@childrens.harvard.edu","Children's Hospital Informatics Program at Harvard-MIT Health Sciences and Technology, Children's Hospital Boston, Boston, Massachusetts, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Children's Hospital Informatics Program at Harvard-MIT Health Sciences and Technology, Children's Hospital Boston, Boston, MA 02115, USA. marc.natter@childrens.harvard.edu","institution_ids":["https://openalex.org/I1288882113"]},{"raw_affiliation_string":"Children's Hospital Informatics Program at Harvard-MIT Health Sciences and Technology, Children's Hospital Boston, Boston, Massachusetts, USA","institution_ids":["https://openalex.org/I1288882113"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5001204705","display_name":"Jun Quan","orcid":"https://orcid.org/0000-0001-7498-598X"},"institutions":[{"id":"https://openalex.org/I2800240351","display_name":"Mountain View College","ror":"https://ror.org/04fh8an03","country_code":"US","type":"education","lineage":["https://openalex.org/I1291072267","https://openalex.org/I2800240351"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"J. Quan","raw_affiliation_strings":["Mountain View, California, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Mountain View, California, USA","institution_ids":["https://openalex.org/I2800240351"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5035846935","display_name":"David M. Ortiz","orcid":null},"institutions":[{"id":"https://openalex.org/I1288882113","display_name":"Boston Children's Hospital","ror":"https://ror.org/00dvg7y05","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1288882113"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"D. M. Ortiz","raw_affiliation_strings":["Children's Hospital Informatics Program at Harvard-MIT Health Sciences and Technology, Children's Hospital Boston, Boston, Massachusetts, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Children's Hospital Informatics Program at Harvard-MIT Health Sciences and Technology, Children's Hospital Boston, Boston, Massachusetts, USA","institution_ids":["https://openalex.org/I1288882113"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5046210717","display_name":"Athos Bousvaros","orcid":null},"institutions":[{"id":"https://openalex.org/I1288882113","display_name":"Boston Children's Hospital","ror":"https://ror.org/00dvg7y05","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1288882113"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"A. Bousvaros","raw_affiliation_strings":["Department of Gastroenterology, Children's Hospital Boston, Boston, Massachusetts, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Gastroenterology, Children's Hospital Boston, Boston, Massachusetts, USA","institution_ids":["https://openalex.org/I1288882113"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5028020433","display_name":"Norman T. Ilowite","orcid":"https://orcid.org/0000-0002-8298-8563"},"institutions":[{"id":"https://openalex.org/I129975664","display_name":"Albert Einstein College of Medicine","ror":"https://ror.org/05cf8a891","country_code":"US","type":"education","lineage":["https://openalex.org/I129975664","https://openalex.org/I4210112371"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"N. T. Ilowite","raw_affiliation_strings":["Department of Pediatrics, Albert Einstein College of Medicine, Bronx, New York, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Pediatrics, Albert Einstein College of Medicine, Bronx, New York, USA","institution_ids":["https://openalex.org/I129975664"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5038339202","display_name":"CJ Inman","orcid":null},"institutions":[{"id":"https://openalex.org/I223532165","display_name":"University of Utah","ror":"https://ror.org/03r0ha626","country_code":"US","type":"education","lineage":["https://openalex.org/I223532165"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"C. J. Inman","raw_affiliation_strings":["Department of Pediatrics, University of Utah, Salt Lake City, Utah, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Pediatrics, University of Utah, Salt Lake City, Utah, USA","institution_ids":["https://openalex.org/I223532165"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5021627780","display_name":"Keith Marsolo","orcid":"https://orcid.org/0000-0002-4416-1549"},"institutions":[{"id":"https://openalex.org/I1285204247","display_name":"Cincinnati Children's Hospital Medical Center","ror":"https://ror.org/01hcyya48","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1285204247"]},{"id":"https://openalex.org/I1297463080","display_name":"Children's Medical Center","ror":"https://ror.org/02ndk3y82","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1297463080"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"K. Marsolo","raw_affiliation_strings":["Division of Biomedical Informatics, Cincinnati Children's Medical Center, Cincinnati, Ohio, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Division of Biomedical Informatics, Cincinnati Children's Medical Center, Cincinnati, Ohio, USA","institution_ids":["https://openalex.org/I1285204247","https://openalex.org/I1297463080"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5071641284","display_name":"Andrew McMurry","orcid":"https://orcid.org/0000-0001-5604-0704"},"institutions":[{"id":"https://openalex.org/I4210155419","display_name":"Center for Systems Biology","ror":"https://ror.org/05r3dyn47","country_code":"US","type":"facility","lineage":["https://openalex.org/I136199984","https://openalex.org/I4210087915","https://openalex.org/I4210155419","https://openalex.org/I48633490"]},{"id":"https://openalex.org/I136199984","display_name":"Harvard University","ror":"https://ror.org/03vek6s52","country_code":"US","type":"education","lineage":["https://openalex.org/I136199984"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"A. J. McMurry","raw_affiliation_strings":["Center for Biomedical Informatics, Harvard Medical School, Boston, Massachusetts, USA","Center for Biomedical Informatics , Harvard Medical School , Boston , Massachusetts , USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Center for Biomedical Informatics, Harvard Medical School, Boston, Massachusetts, USA","institution_ids":["https://openalex.org/I4210155419","https://openalex.org/I136199984"]},{"raw_affiliation_string":"Center for Biomedical Informatics , Harvard Medical School , Boston , Massachusetts , USA","institution_ids":["https://openalex.org/I4210155419","https://openalex.org/I136199984"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5075411546","display_name":"Christy Sandborg","orcid":"https://orcid.org/0000-0002-2654-2647"},"institutions":[{"id":"https://openalex.org/I97018004","display_name":"Stanford University","ror":"https://ror.org/00f54p054","country_code":"US","type":"education","lineage":["https://openalex.org/I97018004"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"C. I. Sandborg","raw_affiliation_strings":["Department of Pediatrics, Stanford University School of Medicine, Stanford, California, USA","Department of Pediatrics Stanford University School of Medicine Stanford California USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Pediatrics, Stanford University School of Medicine, Stanford, California, USA","institution_ids":["https://openalex.org/I97018004"]},{"raw_affiliation_string":"Department of Pediatrics Stanford University School of Medicine Stanford California USA","institution_ids":["https://openalex.org/I97018004"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5011195506","display_name":"Laura E. Schanberg","orcid":"https://orcid.org/0000-0002-1913-6472"},"institutions":[{"id":"https://openalex.org/I4210126298","display_name":"Duke Medical Center","ror":"https://ror.org/03njmea73","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I4210126298","https://openalex.org/I4210144876"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"L. E. Schanberg","raw_affiliation_strings":["Department of Pediatrics, Duke University Medical Center, Durham, North Carolina, USA","Department of Pediatrics Duke University Medical Center  Durham North Carolina USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Pediatrics, Duke University Medical Center, Durham, North Carolina, USA","institution_ids":["https://openalex.org/I4210126298"]},{"raw_affiliation_string":"Department of Pediatrics Duke University Medical Center  Durham North Carolina USA","institution_ids":["https://openalex.org/I4210126298"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5110227697","display_name":"Carol A. Wallace","orcid":null},"institutions":[{"id":"https://openalex.org/I1295499534","display_name":"Seattle Children's Hospital","ror":"https://ror.org/01njes783","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1295499534"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"C. A. Wallace","raw_affiliation_strings":["Department of Pediatrics, Seattle Children's Hospital and Research Institute, Seattle, Washington, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Pediatrics, Seattle Children's Hospital and Research Institute, Seattle, Washington, USA","institution_ids":["https://openalex.org/I1295499534"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5022891703","display_name":"Robert W. Warren","orcid":"https://orcid.org/0000-0003-4700-4482"},"institutions":[{"id":"https://openalex.org/I153297377","display_name":"Medical University of South Carolina","ror":"https://ror.org/012jban78","country_code":"US","type":"education","lineage":["https://openalex.org/I153297377"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"R. W. Warren","raw_affiliation_strings":["Department of Pediatrics, Medical University of South Carolina, Charleston, South Carolina, USA","Department of Pediatrics Medical University of South Carolina  Charleston South Carolina USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Pediatrics, Medical University of South Carolina, Charleston, South Carolina, USA","institution_ids":["https://openalex.org/I153297377"]},{"raw_affiliation_string":"Department of Pediatrics Medical University of South Carolina  Charleston South Carolina USA","institution_ids":["https://openalex.org/I153297377"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5023500196","display_name":"Griffin M. Weber","orcid":"https://orcid.org/0000-0002-2597-881X"},"institutions":[{"id":"https://openalex.org/I136199984","display_name":"Harvard University","ror":"https://ror.org/03vek6s52","country_code":"US","type":"education","lineage":["https://openalex.org/I136199984"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"G. M. Weber","raw_affiliation_strings":["Information Technology, Harvard Medical School, Boston, Massachusetts, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Information Technology, Harvard Medical School, Boston, Massachusetts, USA","institution_ids":["https://openalex.org/I136199984"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5018662278","display_name":"Kenneth D. Mandl","orcid":"https://orcid.org/0000-0002-9781-0477"},"institutions":[{"id":"https://openalex.org/I1288882113","display_name":"Boston Children's Hospital","ror":"https://ror.org/00dvg7y05","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1288882113"]},{"id":"https://openalex.org/I4210155419","display_name":"Center for Systems Biology","ror":"https://ror.org/05r3dyn47","country_code":"US","type":"facility","lineage":["https://openalex.org/I136199984","https://openalex.org/I4210087915","https://openalex.org/I4210155419","https://openalex.org/I48633490"]},{"id":"https://openalex.org/I136199984","display_name":"Harvard University","ror":"https://ror.org/03vek6s52","country_code":"US","type":"education","lineage":["https://openalex.org/I136199984"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"K. D. Mandl","raw_affiliation_strings":["Center for Biomedical Informatics, Harvard Medical School, Boston, Massachusetts, USA","Children's Hospital Informatics Program at Harvard-MIT Health Sciences and Technology, Children's Hospital Boston, Boston, Massachusetts, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Center for Biomedical Informatics, Harvard Medical School, Boston, Massachusetts, USA","institution_ids":["https://openalex.org/I4210155419","https://openalex.org/I136199984"]},{"raw_affiliation_string":"Children's Hospital Informatics Program at Harvard-MIT Health Sciences and Technology, Children's Hospital Boston, Boston, Massachusetts, USA","institution_ids":["https://openalex.org/I1288882113"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":14,"corresponding_author_ids":["https://openalex.org/A5050322352"],"corresponding_institution_ids":["https://openalex.org/I1288882113"],"apc_list":{"value":3967,"currency":"USD","value_usd":3967},"apc_paid":{"value":3967,"currency":"USD","value_usd":3967},"fwci":7.4549,"has_fulltext":true,"cited_by_count":74,"citation_normalized_percentile":{"value":0.97785433,"is_in_top_1_percent":false,"is_in_top_10_percent":true},"cited_by_percentile_year":{"min":90,"max":100},"biblio":{"volume":"20","issue":"1","first_page":"172","last_page":"179"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10200","display_name":"Rheumatoid Arthritis Research and Therapies","score":0.5001000165939331,"subfield":{"id":"https://openalex.org/subfields/2745","display_name":"Rheumatology"},"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/T10200","display_name":"Rheumatoid Arthritis Research and Therapies","score":0.5001000165939331,"subfield":{"id":"https://openalex.org/subfields/2745","display_name":"Rheumatology"},"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/T11616","display_name":"Autoimmune and Inflammatory Disorders Research","score":0.0723000019788742,"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/T12255","display_name":"Biosimilars and Bioanalytical Methods","score":0.04600000008940697,"subfield":{"id":"https://openalex.org/subfields/2403","display_name":"Immunology"},"field":{"id":"https://openalex.org/fields/24","display_name":"Immunology and Microbiology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.6381456255912781},{"id":"https://openalex.org/keywords/data-warehouse","display_name":"Data warehouse","score":0.5635986924171448},{"id":"https://openalex.org/keywords/data-sharing","display_name":"Data sharing","score":0.5140324831008911},{"id":"https://openalex.org/keywords/data-science","display_name":"Data science","score":0.49768856167793274},{"id":"https://openalex.org/keywords/open-source","display_name":"Open source","score":0.44971901178359985},{"id":"https://openalex.org/keywords/data-quality","display_name":"Data quality","score":0.4302595555782318},{"id":"https://openalex.org/keywords/quality","display_name":"Quality (philosophy)","score":0.4242808520793915},{"id":"https://openalex.org/keywords/disease","display_name":"Disease","score":0.42322662472724915},{"id":"https://openalex.org/keywords/software","display_name":"Software","score":0.41345447301864624},{"id":"https://openalex.org/keywords/world-wide-web","display_name":"World Wide Web","score":0.3229101300239563},{"id":"https://openalex.org/keywords/medicine","display_name":"Medicine","score":0.24913617968559265},{"id":"https://openalex.org/keywords/data-mining","display_name":"Data mining","score":0.24635890126228333}],"concepts":[{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.6381456255912781},{"id":"https://openalex.org/C135572916","wikidata":"https://www.wikidata.org/wiki/Q193351","display_name":"Data warehouse","level":2,"score":0.5635986924171448},{"id":"https://openalex.org/C2779965156","wikidata":"https://www.wikidata.org/wiki/Q5227350","display_name":"Data sharing","level":3,"score":0.5140324831008911},{"id":"https://openalex.org/C2522767166","wikidata":"https://www.wikidata.org/wiki/Q2374463","display_name":"Data science","level":1,"score":0.49768856167793274},{"id":"https://openalex.org/C3018397939","wikidata":"https://www.wikidata.org/wiki/Q3644502","display_name":"Open source","level":3,"score":0.44971901178359985},{"id":"https://openalex.org/C24756922","wikidata":"https://www.wikidata.org/wiki/Q1757694","display_name":"Data quality","level":3,"score":0.4302595555782318},{"id":"https://openalex.org/C2779530757","wikidata":"https://www.wikidata.org/wiki/Q1207505","display_name":"Quality (philosophy)","level":2,"score":0.4242808520793915},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.42322662472724915},{"id":"https://openalex.org/C2777904410","wikidata":"https://www.wikidata.org/wiki/Q7397","display_name":"Software","level":2,"score":0.41345447301864624},{"id":"https://openalex.org/C136764020","wikidata":"https://www.wikidata.org/wiki/Q466","display_name":"World Wide Web","level":1,"score":0.3229101300239563},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.24913617968559265},{"id":"https://openalex.org/C124101348","wikidata":"https://www.wikidata.org/wiki/Q172491","display_name":"Data mining","level":1,"score":0.24635890126228333},{"id":"https://openalex.org/C162324750","wikidata":"https://www.wikidata.org/wiki/Q8134","display_name":"Economics","level":0,"score":0.0},{"id":"https://openalex.org/C21547014","wikidata":"https://www.wikidata.org/wiki/Q1423657","display_name":"Operations management","level":1,"score":0.0},{"id":"https://openalex.org/C176217482","wikidata":"https://www.wikidata.org/wiki/Q860554","display_name":"Metric (unit)","level":2,"score":0.0},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.0},{"id":"https://openalex.org/C111472728","wikidata":"https://www.wikidata.org/wiki/Q9471","display_name":"Epistemology","level":1,"score":0.0},{"id":"https://openalex.org/C204787440","wikidata":"https://www.wikidata.org/wiki/Q188504","display_name":"Alternative medicine","level":2,"score":0.0},{"id":"https://openalex.org/C199360897","wikidata":"https://www.wikidata.org/wiki/Q9143","display_name":"Programming language","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":[{"descriptor_ui":"D001171","descriptor_name":"Arthritis, Juvenile","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":false},{"descriptor_ui":"D001171","descriptor_name":"Arthritis, Juvenile","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":false},{"descriptor_ui":"D001171","descriptor_name":"Arthritis, Juvenile","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":false},{"descriptor_ui":"D002648","descriptor_name":"Child","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D002648","descriptor_name":"Child","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D002648","descriptor_name":"Child","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D002908","descriptor_name":"Chronic Disease","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":false},{"descriptor_ui":"D002908","descriptor_name":"Chronic Disease","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":false},{"descriptor_ui":"D002908","descriptor_name":"Chronic Disease","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":false},{"descriptor_ui":"D006801","descriptor_name":"Humans","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":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D007256","descriptor_name":"Information Systems","qualifier_ui":"Q000458","qualifier_name":"organization & administration","is_major_topic":false},{"descriptor_ui":"D007256","descriptor_name":"Information Systems","qualifier_ui":"Q000458","qualifier_name":"organization & administration","is_major_topic":false},{"descriptor_ui":"D007256","descriptor_name":"Information Systems","qualifier_ui":"Q000458","qualifier_name":"organization & administration","is_major_topic":false},{"descriptor_ui":"D012042","descriptor_name":"Registries","qualifier_ui":"Q000706","qualifier_name":"statistics & numerical data","is_major_topic":false},{"descriptor_ui":"D012042","descriptor_name":"Registries","qualifier_ui":"Q000706","qualifier_name":"statistics & numerical data","is_major_topic":false},{"descriptor_ui":"D012042","descriptor_name":"Registries","qualifier_ui":"Q000706","qualifier_name":"statistics & numerical data","is_major_topic":false},{"descriptor_ui":"D012985","descriptor_name":"Software Design","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D012985","descriptor_name":"Software Design","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D012985","descriptor_name":"Software Design","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D014481","descriptor_name":"United States","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":false},{"descriptor_ui":"D014481","descriptor_name":"United States","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":false},{"descriptor_ui":"D014481","descriptor_name":"United States","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":false},{"descriptor_ui":"D014584","descriptor_name":"User-Computer Interface","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D014584","descriptor_name":"User-Computer Interface","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D014584","descriptor_name":"User-Computer Interface","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D015212","descriptor_name":"Inflammatory Bowel Diseases","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":false},{"descriptor_ui":"D015212","descriptor_name":"Inflammatory Bowel Diseases","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":false},{"descriptor_ui":"D015212","descriptor_name":"Inflammatory Bowel Diseases","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":false},{"descriptor_ui":"D016247","descriptor_name":"Information Storage and Retrieval","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D016247","descriptor_name":"Information Storage and Retrieval","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D016247","descriptor_name":"Information Storage and Retrieval","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D020407","descriptor_name":"Internet","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":false},{"descriptor_ui":"D020407","descriptor_name":"Internet","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":"D033181","descriptor_name":"Information Dissemination","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D033181","descriptor_name":"Information Dissemination","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D035843","descriptor_name":"Biomedical Research","qualifier_ui":"Q000458","qualifier_name":"organization & administration","is_major_topic":false},{"descriptor_ui":"D035843","descriptor_name":"Biomedical Research","qualifier_ui":"Q000458","qualifier_name":"organization & administration","is_major_topic":false},{"descriptor_ui":"D035843","descriptor_name":"Biomedical Research","qualifier_ui":"Q000458","qualifier_name":"organization & administration","is_major_topic":false}],"locations_count":4,"locations":[{"id":"doi:10.1136/amiajnl-2012-001042","is_oa":true,"landing_page_url":"https://doi.org/10.1136/amiajnl-2012-001042","pdf_url":"https://academic.oup.com/jamia/article-pdf/20/1/172/9517623/20-1-172.pdf","source":{"id":"https://openalex.org/S129839026","display_name":"Journal of the American Medical Informatics Association","issn_l":"1067-5027","issn":["1067-5027","1527-974X"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310311648","host_organization_name":"Oxford University Press","host_organization_lineage":["https://openalex.org/P4310311648","https://openalex.org/P4310311647"],"host_organization_lineage_names":["Oxford University Press","University of Oxford"],"type":"journal"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of the American Medical Informatics Association","raw_type":"journal-article"},{"id":"pmid:22733975","is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/22733975","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":"Journal of the American Medical Informatics Association : JAMIA","raw_type":null},{"id":"pmh:oai:dash.harvard.edu:1/11879405","is_oa":true,"landing_page_url":"http://nrs.harvard.edu/urn-3:HUL.InstRepos:11879405","pdf_url":null,"source":{"id":"https://openalex.org/S4306401540","display_name":"Digital Access to Scholarship at Harvard (DASH) (Harvard University)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":"https://openalex.org/I136199984","host_organization_name":"Harvard University","host_organization_lineage":["https://openalex.org/I136199984"],"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":"","raw_type":"Journal Article"},{"id":"pmh:oai:europepmc.org:2846806","is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/3555330","pdf_url":null,"source":{"id":"https://openalex.org/S4306400806","display_name":"Europe PMC (PubMed Central)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":"https://openalex.org/I1303153112","host_organization_name":"European Bioinformatics Institute","host_organization_lineage":["https://openalex.org/I1303153112"],"host_organization_lineage_names":[],"type":"repository"},"license":"other-oa","license_id":"https://openalex.org/licenses/other-oa","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"Text"}],"best_oa_location":{"id":"doi:10.1136/amiajnl-2012-001042","is_oa":true,"landing_page_url":"https://doi.org/10.1136/amiajnl-2012-001042","pdf_url":"https://academic.oup.com/jamia/article-pdf/20/1/172/9517623/20-1-172.pdf","source":{"id":"https://openalex.org/S129839026","display_name":"Journal of the American Medical Informatics Association","issn_l":"1067-5027","issn":["1067-5027","1527-974X"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310311648","host_organization_name":"Oxford University Press","host_organization_lineage":["https://openalex.org/P4310311648","https://openalex.org/P4310311647"],"host_organization_lineage_names":["Oxford University Press","University of Oxford"],"type":"journal"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of the American Medical Informatics Association","raw_type":"journal-article"},"sustainable_development_goals":[{"score":0.5799999833106995,"id":"https://metadata.un.org/sdg/17","display_name":"Partnerships for the goals"}],"awards":[{"id":"https://openalex.org/G2524382968","display_name":null,"funder_award_id":"RC2AR058934","funder_id":"https://openalex.org/F4320332161","funder_display_name":"National Institutes of Health"},{"id":"https://openalex.org/G3413798857","display_name":null,"funder_award_id":"T15LM007092","funder_id":"https://openalex.org/F4320332161","funder_display_name":"National Institutes of Health"},{"id":"https://openalex.org/G3579196886","display_name":null,"funder_award_id":"RC2AR058934","funder_id":"https://openalex.org/F4320337362","funder_display_name":"National Institute of Arthritis and Musculoskeletal and Skin Diseases"},{"id":"https://openalex.org/G7419733471","display_name":null,"funder_award_id":"T15LM007092","funder_id":"https://openalex.org/F4320337372","funder_display_name":"U.S. National Library of Medicine"}],"funders":[{"id":"https://openalex.org/F4320306237","display_name":"Arthritis Foundation","ror":"https://ror.org/04zk9fe75"},{"id":"https://openalex.org/F4320309575","display_name":"Cincinnati Children's Hospital Medical Center","ror":"https://ror.org/01hcyya48"},{"id":"https://openalex.org/F4320332161","display_name":"National Institutes of Health","ror":"https://ror.org/01cwqze88"},{"id":"https://openalex.org/F4320337357","display_name":"National Institute of Diabetes and Digestive and Kidney Diseases","ror":"https://ror.org/00adh9b73"},{"id":"https://openalex.org/F4320337362","display_name":"National Institute of Arthritis and Musculoskeletal and Skin Diseases","ror":"https://ror.org/006zn3t30"},{"id":"https://openalex.org/F4320337372","display_name":"U.S. National Library of Medicine","ror":"https://ror.org/0060t0j89"},{"id":"https://openalex.org/F4320337533","display_name":"Duke Clinical Research Institute","ror":"https://ror.org/00py81415"}],"has_content":{"grobid_xml":true,"pdf":true},"content_urls":{"pdf":"https://content.openalex.org/works/W2138278593.pdf","grobid_xml":"https://content.openalex.org/works/W2138278593.grobid-xml"},"referenced_works_count":28,"referenced_works":["https://openalex.org/W202860122","https://openalex.org/W574473579","https://openalex.org/W1484976590","https://openalex.org/W1594888675","https://openalex.org/W1986992328","https://openalex.org/W1997758496","https://openalex.org/W2012254260","https://openalex.org/W2019833987","https://openalex.org/W2020393951","https://openalex.org/W2021579922","https://openalex.org/W2033947896","https://openalex.org/W2043033750","https://openalex.org/W2053401144","https://openalex.org/W2061160331","https://openalex.org/W2064892481","https://openalex.org/W2069933029","https://openalex.org/W2075465886","https://openalex.org/W2098488998","https://openalex.org/W2100837203","https://openalex.org/W2103193738","https://openalex.org/W2123712309","https://openalex.org/W2124994452","https://openalex.org/W2131107955","https://openalex.org/W2135974703","https://openalex.org/W2140728823","https://openalex.org/W2187796899","https://openalex.org/W2400968868","https://openalex.org/W2555756618"],"related_works":["https://openalex.org/W2748952813","https://openalex.org/W3082463427","https://openalex.org/W4205318379","https://openalex.org/W3012143344","https://openalex.org/W3201294490","https://openalex.org/W1808694123","https://openalex.org/W4287825939","https://openalex.org/W2583184028","https://openalex.org/W3197656228","https://openalex.org/W3013689372"],"abstract_inverted_index":{"OBJECTIVE:":[0],"Registries":[1],"are":[2,13],"a":[3,41,83,103,223,241],"well-established":[4],"mechanism":[5],"for":[6,23,45,86,215,226],"obtaining":[7],"high":[8],"quality,":[9],"disease-specific":[10],"data,":[11],"but":[12],"often":[14],"highly":[15],"project-specific":[16],"in":[17,231,234],"their":[18,117],"design,":[19],"implementation,":[20],"and":[21,37,63,96,114,140,154,179],"policies":[22],"data":[24,34,47,60,119,125,138,208,229],"use.":[25],"In":[26],"contrast":[27],"to":[28,101,116,173,197,201],"the":[29,51,57,64,94,189,194,216,235],"conventional":[30],"model":[31],"of":[32,82,175,213],"centralized":[33],"contribution,":[35],"warehousing,":[36],"control,":[38],"we":[39,92],"design":[40,79],"self-scaling":[42,166],"registry":[43,167],"technology":[44,168],"collaborative":[46],"sharing,":[48],"based":[49],"upon":[50],"widely":[52],"adopted":[53],"Integrating":[54],"Biology":[55],"&":[56,148],"Bedside":[58],"(i2b2)":[59],"warehousing":[61],"framework":[62],"Shared":[65],"Health":[66],"Research":[67,150],"Information":[68],"Network":[69],"(SHRINE)":[70],"peer-to-peer":[71],"networking":[72],"software.":[73],"MATERIALS":[74],"AND":[75],"METHODS:":[76],"Focusing":[77],"our":[78],"around":[80],"creation":[81],"scalable":[84],"solution":[85,244],"collaboration":[87,202],"within":[88,178],"multi-site":[89],"disease":[90],"registries,":[91],"leverage":[93],"i2b2":[95,165],"SHRINE":[97],"open":[98],"source":[99],"software":[100],"create":[102],"modular,":[104],"ontology-based,":[105],"federated":[106],"infrastructure":[107,225],"that":[108],"provides":[109],"research":[110,181,228,247],"investigators":[111],"full":[112],"ownership":[113],"access":[115],"contributed":[118],"while":[120,203],"supporting":[121,134],"permissioned":[122],"yet":[123],"robust":[124],"sharing.":[126,209],"We":[127,192,237],"accomplish":[128],"these":[129],"objectives":[130],"via":[131],"web":[132],"services":[133],"peer-group":[135],"overlays,":[136],"group-aware":[137],"aggregation,":[139],"administrative":[141],"functions.":[142],"RESULTS:":[143],"The":[144,211],"56-site":[145],"Childhood":[146],"Arthritis":[147],"Rheumatology":[149],"Alliance":[151],"(CARRA)":[152],"Registry":[153,220],"3-site":[155],"Harvard":[156],"Inflammatory":[157],"Bowel":[158],"Diseases":[159],"Longitudinal":[160],"Data":[161],"Repository":[162],"now":[163],"utilize":[164,193],"(i2b2-SSR).":[169],"This":[170],"platform,":[171],"extensible":[172],"federation":[174],"multiple":[176],"projects":[177],"between":[180],"networks,":[182],"encompasses":[183],">6000":[184],"subjects":[185],"at":[186],"sites":[187],"throughout":[188],"USA.":[190,236],"DISCUSSION:":[191],"i2b2-SSR":[195,214,239],"platform":[196],"minimize":[198],"technical":[199],"barriers":[200],"enabling":[204],"fine-grained":[205],"control":[206],"over":[207],"CONCLUSIONS:":[210],"implementation":[212],"multi-site,":[217],"multi-stakeholder":[218],"CARRA":[219],"has":[221],"established":[222],"digital":[224],"community-driven":[227],"sharing":[230],"pediatric":[232],"rheumatology":[233],"envision":[238],"as":[240],"scalable,":[242],"reusable":[243],"facilitating":[245],"interdisciplinary":[246],"across":[248],"diseases.":[249]},"counts_by_year":[{"year":2021,"cited_by_count":3},{"year":2020,"cited_by_count":4},{"year":2019,"cited_by_count":11},{"year":2018,"cited_by_count":9},{"year":2017,"cited_by_count":5},{"year":2016,"cited_by_count":9},{"year":2015,"cited_by_count":10},{"year":2014,"cited_by_count":14},{"year":2013,"cited_by_count":8},{"year":2012,"cited_by_count":1}],"updated_date":"2026-04-29T09:16:38.111599","created_date":"2025-10-10T00:00:00"}