{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,11]],"date-time":"2026-08-11T20:31:50Z","timestamp":1786480310549,"version":"build-2736575974"},"reference-count":21,"publisher":"Ovid Technologies (Wolters Kluwer Health)","issue":"12","funder":[{"name":"NephCure Kidney Network for Patients with Nephrotic Syndrome","award":["PPRN-1306-04903"],"award-info":[{"award-number":["PPRN-1306-04903"]}]},{"DOI":"10.13039\/100000062","name":"National Institute of Diabetes and Digestive and Kidney Diseases","doi-asserted-by":"publisher","award":["5T32DK007378-39"],"award-info":[{"award-number":["5T32DK007378-39"]}],"id":[{"id":"10.13039\/100000062","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000062","name":"National Institute of Diabetes and Digestive and Kidney Diseases","doi-asserted-by":"publisher","award":["5KL2TR002241-04"],"award-info":[{"award-number":["5KL2TR002241-04"]}],"id":[{"id":"10.13039\/100000062","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000062","name":"National Institute of Diabetes and Digestive and Kidney Diseases","doi-asserted-by":"publisher","award":["K23 DK123413"],"award-info":[{"award-number":["K23 DK123413"]}],"id":[{"id":"10.13039\/100000062","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000062","name":"National Institute of Diabetes and Digestive and Kidney Diseases","doi-asserted-by":"publisher","award":["K08 DK115891 DK115891"],"award-info":[{"award-number":["K08 DK115891 DK115891"]}],"id":[{"id":"10.13039\/100000062","id-type":"DOI","asserted-by":"publisher"}]},{"name":"National Center for Advancing Translational Sciences for the Michigan Institute for Clinical and Health Research","award":["UL1TR002240"],"award-info":[{"award-number":["UL1TR002240"]}]}],"content-domain":{"domain":["lww.com","ovid.com"],"crossmark-restriction":true},"short-container-title":["Kidney360"],"published-print":{"date-parts":[[2021,12]]},"abstract":"<jats:sec>\n                    <jats:title>Key Points<\/jats:title>\n                    <jats:p>\n                      <jats:list list-type=\"bullet\">\n                        <jats:list-item>\n                          <jats:p>A computable phenotype combines routinely collected data elements from the EHR with logic elements to identify a condition of interest.<\/jats:p>\n                        <\/jats:list-item>\n                        <jats:list-item>\n                          <jats:p>This validated computable phenotype has strong classification characteristics to identify individuals with primary nephrotic syndrome.<\/jats:p>\n                        <\/jats:list-item>\n                        <jats:list-item>\n                          <jats:p>This computable phenotype for primary nephrotic syndrome can facilitate future research of these rare diseases.<\/jats:p>\n                        <\/jats:list-item>\n                      <\/jats:list>\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Primary nephrotic syndromes are rare diseases which can impede adequate sample size for observational patient-oriented research and clinical trial enrollment. A computable phenotype may be powerful in identifying patients with these diseases for research across multiple institutions.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A comprehensive algorithm of inclusion and exclusion ICD-9 and ICD-10 codes to identify patients with primary nephrotic syndrome was developed. The algorithm was executed against the PCORnet CDM at three institutions from January 1, 2009 to January 1, 2018, where a random selection of 50 cases and 50 noncases (individuals not meeting case criteria seen within the same calendar year and within 5 years of age of a case) were reviewed by a nephrologist, for a total of 150 cases and 150 noncases reviewed. The classification accuracy (sensitivity, specificity, positive and negative predictive value, F1 score) of the computable phenotype was determined.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The algorithm identified a total of 2708 patients with nephrotic syndrome from 4,305,092 distinct patients in the CDM at all sites from 2009 to 2018. For all sites, the sensitivity, specificity, and area under the curve of the algorithm were 99% (95% CI, 97% to 99%), 79% (95% CI, 74% to 85%), and 0.9 (0.84 to 0.97), respectively. The most common causes of false positive classification were secondary FSGS (nine out of 39) and lupus nephritis (nine out of 39).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>This computable phenotype had good classification in identifying both children and adults with primary nephrotic syndrome utilizing only ICD-9 and ICD-10 codes, which are available across institutions in the United States. This may facilitate future screening and enrollment for research studies and enable comparative effectiveness research. Further refinements to the algorithm including use of laboratory data or addition of natural language processing may help better distinguish primary and secondary causes of nephrotic syndrome.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.34067\/kid.0002892021","type":"journal-article","created":{"date-parts":[[2021,9,27]],"date-time":"2021-09-27T17:55:35Z","timestamp":1632765335000},"page":"1979-1986","update-policy":"https:\/\/doi.org\/10.1097\/lww.0000000000001000","source":"Crossref","is-referenced-by-count":9,"title":["Validating a Computable Phenotype for Nephrotic Syndrome in Children and Adults Using PCORnet Data"],"prefix":"10.34067","volume":"2","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1735-7706","authenticated-orcid":false,"given":"Andrea L.","family":"Oliverio","sequence":"first","affiliation":[{"name":"Department of Internal Medicine, Nephrology, University of Michigan, Ann Arbor, Michigan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dorota","family":"Marchel","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, CS Mott Children's Hospital, Ann Arbor, Michigan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1183-8330","authenticated-orcid":false,"given":"Jonathan P.","family":"Troost","sequence":"additional","affiliation":[{"name":"Michigan Institute for Clinical and Health Research, University of Michigan, Ann Arbor, Michigan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7988-3082","authenticated-orcid":false,"given":"Isabelle","family":"Ayoub","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, Division of Nephrology, The Ohio State University Wexner Medical Center, Columbus, Ohio"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2271-500X","authenticated-orcid":false,"given":"Salem","family":"Almaani","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, Division of Nephrology, The Ohio State University Wexner Medical Center, Columbus, Ohio"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jessica","family":"Greco","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, Division of Nephrology, The Ohio State University Wexner Medical Center, Columbus, Ohio"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cheryl L.","family":"Tran","sequence":"additional","affiliation":[{"name":"Division of Pediatric Nephrology, Mayo Clinic, Rochester, Minnesota"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michelle R.","family":"Denburg","sequence":"additional","affiliation":[{"name":"Division of Nephrology, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3217-4147","authenticated-orcid":false,"given":"Michael","family":"Matheny","sequence":"additional","affiliation":[{"name":"Department of Veterans Affairs, Vanderbilt University, Nashville, Tennessee"},{"name":"Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, Tennessee"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chad","family":"Dorn","sequence":"additional","affiliation":[{"name":"Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, Tennessee"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3048-6983","authenticated-orcid":false,"given":"Susan F.","family":"Massengill","sequence":"additional","affiliation":[{"name":"Pediatric Nephrology, Levine Children's Hospital at Atrium Health, Charlotte, North Carolina"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hailey","family":"Desmond","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, CS Mott Children's Hospital, Ann Arbor, Michigan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4473-9045","authenticated-orcid":false,"given":"Debbie S.","family":"Gipson","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, CS Mott Children's Hospital, Ann Arbor, Michigan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6055-764X","authenticated-orcid":false,"given":"Laura H.","family":"Mariani","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, Nephrology, University of Michigan, Ann Arbor, Michigan"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"276","published-online":{"date-parts":[[2021,12,30]]},"reference":[{"key":"B1-20250825","article-title":"KDIGO clinical practice guideline for glomerulonephritis"},{"key":"B2-20250825","doi-asserted-by":"crossref","first-page":"294","DOI":"10.2215\/CJN.15161219","article-title":"APOL1 nephropathy: From genetics to clinical applications","volume":"16","author":"Friedman","year":"2020","journal-title":"Clin J Am Soc Nephrol"},{"key":"B3-20250825","doi-asserted-by":"crossref","first-page":"1883","DOI":"10.1681\/ASN.2019070696","article-title":"Proteomic analysis identifies distinct glomerular extracellular matrix in collapsing focal segmental glomerulosclerosis","volume":"31","author":"Merchant","year":"2020","journal-title":"J Am Soc Nephrol"},{"key":"B4-20250825","doi-asserted-by":"crossref","first-page":"310","DOI":"10.1093\/ndt\/gfw443","article-title":"Interstitial fibrosis scored on whole-slide digital imaging of kidney biopsies is a predictor of outcome in proteinuric glomerulopathies","volume":"33","author":"Mariani","year":"2018","journal-title":"Nephrol Dial Transplant"},{"key":"B5-20250825","doi-asserted-by":"crossref","first-page":"216","DOI":"10.1053\/j.ajkd.2020.04.014","article-title":"Proteinuria reduction and kidney survival in focal segmental glomerulosclerosis","volume":"77","author":"Troost","year":"2021","journal-title":"Am J Kidney Dis"},{"key":"B6-20250825","doi-asserted-by":"crossref","first-page":"1752","DOI":"10.2215\/CJN.13091215","article-title":"Renal survival in patients with collapsing compared with not otherwise specified FSGS","volume":"11","author":"Laurin","year":"2016","journal-title":"Clin J Am Soc Nephrol"},{"key":"B7-20250825","doi-asserted-by":"crossref","first-page":"414","DOI":"10.1093\/ndt\/gfq665","article-title":"The incidence of primary glomerulonephritis worldwide: A systematic review of the literature","volume":"26","author":"McGrogan","year":"2011","journal-title":"Nephrol Dial Transplant"},{"key":"B8-20250825","doi-asserted-by":"crossref","first-page":"673","DOI":"10.2215\/CJN.13101019","article-title":"Identifying outcomes important to patients with glomerular disease and their caregivers","volume":"15","author":"Carter","year":"2020","journal-title":"Clin J Am Soc Nephrol"},{"key":"B10-20250825","doi-asserted-by":"crossref","first-page":"87","DOI":"10.1016\/j.jbi.2018.03.001","article-title":"Development of an automated phenotyping algorithm for hepatorenal syndrome","volume":"80","author":"Koola","year":"2018","journal-title":"J Biomed Inform"},{"key":"B11-20250825","doi-asserted-by":"crossref","first-page":"60","DOI":"10.1016\/j.jclinepi.2020.09.036","article-title":"PCORnet\u00ae 2020: Current state, accomplishments, and future directions","volume":"129","author":"Forrest","year":"2021","journal-title":"J Clin Epidemiol"},{"key":"B12-20250825","doi-asserted-by":"crossref","first-page":"632","DOI":"10.1002\/pds.4718","article-title":"Performance of a computable phenotype for identification of patients with diabetes within PCORnet: The patient-centered clinical research network","volume":"28","author":"Wiese","year":"2019","journal-title":"Pharmacoepidemiol Drug Saf"},{"key":"B13-20250825","doi-asserted-by":"crossref","first-page":"e00637","DOI":"10.1002\/prp2.637","article-title":"Diabetes medication regimens and patient clinical characteristics in the national patient-centered clinical research network, PCORnet","volume":"8","author":"Bachmann","year":"2020","journal-title":"Pharmacol Res Perspect"},{"key":"B14-20250825","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1016\/j.ijmedinf.2018.09.016","article-title":"Identifying heart failure using EMR-based algorithms","volume":"120","author":"Tison","year":"2018","journal-title":"Int J Med Inform"},{"key":"B17-20250825","doi-asserted-by":"crossref","first-page":"2427","DOI":"10.1681\/ASN.2019040365","article-title":"Using electronic health record data to rapidly identify children with glomerular disease for clinical research","volume":"30","author":"Denburg","year":"2019","journal-title":"J Am Soc Nephrol"},{"key":"B19-20250825","doi-asserted-by":"crossref","first-page":"576","DOI":"10.1136\/amiajnl-2014-002864","article-title":"PCORnet: Turning a dream into reality","volume":"21","author":"Collins","year":"2014","journal-title":"J Am Med Inform Assoc"},{"key":"B20-20250825","doi-asserted-by":"crossref","first-page":"578","DOI":"10.1136\/amiajnl-2014-002747","article-title":"Launching PCORnet, a national patient-centered clinical research network","volume":"21","author":"Fleurence","year":"2014","journal-title":"J Am Med Inform Assoc"},{"key":"B21-20250825","doi-asserted-by":"crossref","first-page":"925","DOI":"10.1016\/j.jclinepi.2003.12.019","article-title":"Empirical Bayes estimates generated in a hierarchical summary ROC analysis agreed closely with those of a full Bayesian analysis","volume":"57","author":"Macaskill","year":"2004","journal-title":"J Clin Epidemiol"},{"key":"B23-20250825","doi-asserted-by":"crossref","first-page":"759","DOI":"10.1681\/ASN.2017090958","article-title":"Differentiating primary, genetic, and secondary FSGS in adults: A clinicopathologic approach","volume":"29","author":"De Vriese","year":"2018","journal-title":"J Am Soc Nephrol"},{"key":"B24-20250825","doi-asserted-by":"crossref","first-page":"889","DOI":"10.1097\/MCG.0000000000000583","article-title":"Defining a patient population with cirrhosis: An automated algorithm with natural language processing","volume":"50","author":"Chang","year":"2016","journal-title":"J Clin Gastroenterol"},{"key":"B25-20250825","doi-asserted-by":"crossref","first-page":"2346","DOI":"10.1016\/j.chest.2020.12.011","article-title":"Identifying and characterizing a chronic cough cohort through electronic health records","volume":"159","author":"Weiner","year":"2020","journal-title":"Chest"},{"key":"B26-20250825","doi-asserted-by":"crossref","first-page":"892","DOI":"10.1093\/ndt\/gfv108","article-title":"Pro: \u2018The usefulness of biomarkers in glomerular diseases\u2019. The problem: Moving from syndrome to mechanism: Individual patient variability in disease presentation, course and response to therapy","volume":"30","author":"Mariani","year":"2015","journal-title":"Nephrol Dial Transplant"}],"container-title":["Kidney360"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.ovid.com\/10.34067\/KID.0002892021","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,11]],"date-time":"2026-08-11T20:02:36Z","timestamp":1786478556000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.ovid.com\/10.34067\/KID.0002892021"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,12]]},"references-count":21,"journal-issue":{"issue":"12","published-print":{"date-parts":[[2021]]}},"URL":"https:\/\/doi.org\/10.34067\/kid.0002892021","relation":{},"ISSN":["2641-7650"],"issn-type":[{"value":"2641-7650","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,12]]},"assertion":[{"value":"2021-05-05","name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2021-09-15","name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}}]}}