{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,17]],"date-time":"2026-10-17T12:40:25Z","timestamp":1792240825999,"version":"4.4.0"},"reference-count":21,"publisher":"Wiley","issue":"9","license":[{"start":{"date-parts":[[2023,7,4]],"date-time":"2023-07-04T00:00:00Z","timestamp":1688428800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000050","name":"National Heart, Lung, and Blood Institute","doi-asserted-by":"publisher","award":["K24 HL143281"],"award-info":[{"award-number":["K24 HL143281"]}],"id":[{"id":"10.13039\/100000050","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Pulmonology"],"published-print":{"date-parts":[[2024,9]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Childhood interstitial and diffuse lung disease (chILD) encompasses a broad spectrum of rare disorders. The Children's Interstitial and Diffuse Lung Disease Research Network (chILDRN) established a prospective registry to advance knowledge regarding etiology, phenotype, natural history, and management of these disorders.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>This longitudinal, observational, multicenter registry utilizes single\u2010IRB reliance agreements, with participation from 25 chILDRN centers across the U.S. Clinical data are collected and managed using the Research Electronic Data Capture (REDCap) electronic data platform.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>We report the study design and selected elements of the initial Registry enrollment cohort, which includes 683 subjects with a broad range of chILD diagnoses. The most common diagnosis reported was neuroendocrine cell hyperplasia of infancy, with 155 (23%) subjects. Components of underlying disease biology were identified by enrolling sites, with cohorts of interstitial fibrosis, immune dysregulation, and airway disease being most commonly reported. Prominent morbidities affecting enrolled children included home supplemental oxygen use (63%) and failure to thrive (46%).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>This Registry is the largest longitudinal chILD cohort in the United States to date, providing a powerful framework for collaborating centers committed to improving the understanding and treatment of these rare disorders.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/ppul.26568","type":"journal-article","created":{"date-parts":[[2023,7,4]],"date-time":"2023-07-04T10:06:55Z","timestamp":1688465215000},"page":"2236-2246","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":30,"title":["The US\u00a0national registry for childhood interstitial and diffuse lung disease: Report of study design and initial enrollment cohort"],"prefix":"10.1002","volume":"59","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9386-3398","authenticated-orcid":false,"given":"Rebekah J.","family":"Nevel","sequence":"first","affiliation":[{"name":"Department of Child Health, Pediatric Pulmonary Medicine University of Missouri Children's Hospital Columbia Missouri USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0571-0285","authenticated-orcid":false,"given":"Gail H.","family":"Deutsch","sequence":"additional","affiliation":[{"name":"Department of Laboratory Medicine and Pathology, Seattle Children's Hospital University of Washington Medical Center Seattle Washington USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0009-0194-3207","authenticated-orcid":false,"given":"Daniel","family":"Craven","sequence":"additional","affiliation":[{"name":"Pediatric Pulmonology, Rainbow Babies &amp; Children's Hospital Case School of Medicine Cleveland Ohio USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robin","family":"Deterding","sequence":"additional","affiliation":[{"name":"Section of Pediatric Pulmonology, Department of Pediatrics, University of Colorado School of Medicine Children's Hospital of Colorado Aurora Colorado USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martha P.","family":"Fishman","sequence":"additional","affiliation":[{"name":"Division of Pulmonary Medicine, Boston Children's Hospital Harvard Medical School Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9299-0499","authenticated-orcid":false,"given":"Jennifer A.","family":"Wambach","sequence":"additional","affiliation":[{"name":"Edward Mallinckrodt Department of Pediatrics, Division of Newborn Medicine, Washington University School of Medicine St. Louis Children's Hospital St. Louis Missouri USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3566-9690","authenticated-orcid":false,"given":"Alicia","family":"Casey","sequence":"additional","affiliation":[{"name":"Division of Pulmonary Medicine, Boston Children's Hospital Harvard Medical School Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5008-3121","authenticated-orcid":false,"given":"Katie","family":"Krone","sequence":"additional","affiliation":[{"name":"Division of Pulmonary Medicine, Boston Children's Hospital Harvard Medical School Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Deborah R.","family":"Liptzin","sequence":"additional","affiliation":[{"name":"Section of Pediatric Pulmonology, Department of Pediatrics, University of Colorado School of Medicine Children's Hospital of Colorado Aurora Colorado 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USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5863-7379","authenticated-orcid":false,"given":"William A.","family":"Gower","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Pediatric Pulmonology University of North Carolina School of Medicine Chapel Hill North Carolina USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3938-0330","authenticated-orcid":false,"given":"James S.","family":"Hagood","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Pediatric Pulmonology University of North Carolina School of Medicine Chapel Hill North Carolina USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5202-2998","authenticated-orcid":false,"given":"Carol","family":"Conrad","sequence":"additional","affiliation":[{"name":"Pulmonary Medicine Pediatrics Stanford University School of Medicine Palo Alto California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0958-6277","authenticated-orcid":false,"given":"Jade B.","family":"Tam\u2010Williams","sequence":"additional","affiliation":[{"name":"Pulmonary and Sleep Medicine Children's Mercy Hospital Kansas City Missouri USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth K.","family":"Fiorino","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Donald and Barbara Zucker School of Medicine at Hofstra\/Northwell Steven and Alexandra Cohen Children's Medical Center New York New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Samuel","family":"Goldfarb","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, School of Medicine, Division of Pulmonary and Sleep Medicine University of Minnesota Minneapolis Minnesota 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Los Angeles California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cheryl","family":"Lew","sequence":"additional","affiliation":[{"name":"Division of Pediatric Pulmonology\/Sleep Medicine, Keck School of Medicine, Children's Hospital Los Angeles University of Southern California Los Angeles California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2853-0615","authenticated-orcid":false,"given":"Maria","family":"Santiago","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Donald and Barbara Zucker School of Medicine at Hofstra\/Northwell Steven and Alexandra Cohen Children's Medical Center New York New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Antonia","family":"Popova","sequence":"additional","affiliation":[{"name":"Pediatrics University of Michigan C. S. Mott Children's Hospital Ann Arbor Michigan USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aliva","family":"De","sequence":"additional","affiliation":[{"name":"Division of Pediatric Pulmonology, Columbia University Irving Medical Center Vagelos College of Physicians and Surgeons New York New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marilynn","family":"Chan","sequence":"additional","affiliation":[{"name":"Pediatric Pulmonology University of California San Francisco Benioff Children's Hospital San Francisco California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael R.","family":"Powers","sequence":"additional","affiliation":[{"name":"Pediatrics, Doernbecher Children's Hospital Oregon Health &amp; Science University Portland Oregon USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maureen B.","family":"Josephson","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Pulmonary and Sleep Medicine, Children's Hospital of Philadelphia University of Pennsylvania Perelman School of Medicine Philadelphia Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Devaney","family":"Camburn","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Pulmonary and Sleep Medicine, Children's Hospital of Philadelphia University of Pennsylvania Perelman School of Medicine Philadelphia Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura","family":"Voss","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Pulmonary and Sleep Medicine, Children's Hospital of Philadelphia University of Pennsylvania Perelman School of Medicine Philadelphia Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yun","family":"Li","sequence":"additional","affiliation":[{"name":"Department of Biostatistics, Epidemiology &amp; Informatics Perelman School of Medicine of the University of Pennsylvania Philadelphia Pennsylvania USA"},{"name":"Department of Pediatrics Perelman School of Medicine of the University of Pennsylvania Philadelphia Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3297-8532","authenticated-orcid":false,"given":"Lisa R.","family":"Young","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Pulmonary and Sleep Medicine, Children's Hospital of Philadelphia University of Pennsylvania Perelman School of Medicine Philadelphia Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"for the chILD Registry Collaborative","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,7,4]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-017-0637-x"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1136\/thoraxjnl-2017-210519"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.arbres.2021.06.001"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1164\/rccm.200703-393OC"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1513\/AnnalsATS.201501-064OC"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.3390\/jcm11061747"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1183\/16000617.0188-2022"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2352-4642(19)30117-8"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1136\/thoraxjnl-2021-217751"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1136\/thoraxjnl-2021-217941"},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.24808"},{"key":"e_1_2_10_13_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-016-0389-z"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.1183\/13993003.01855-2018"},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.1513\/AnnalsATS.201605-402OT"},{"key":"e_1_2_10_16_1","first-page":"A4191","article-title":"The National registry for childhood interstitial and diffuse lung diseases: an initial report from the ChILD research network. B97. Importance of longitudinal cohort studies in pediatrics","volume":"197","author":"Young LR","year":"2018","journal-title":"Am J Respir Crit Care Med"},{"key":"e_1_2_10_17_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2008.08.010"},{"key":"e_1_2_10_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2019.103208"},{"key":"e_1_2_10_19_1","doi-asserted-by":"publisher","DOI":"10.1164\/ajrccm.156.3.9703051"},{"key":"e_1_2_10_20_1","unstructured":"BureauUSC. QuickFacts: race and hispanic origin. 2020."},{"key":"e_1_2_10_21_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-022-02399-2"},{"key":"e_1_2_10_22_1","doi-asserted-by":"publisher","DOI":"10.1183\/13993003.01512-2022"}],"container-title":["Pediatric Pulmonology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ppul.26568","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,8,14]],"date-time":"2024-08-14T09:45:30Z","timestamp":1723628730000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/ppul.26568"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,7,4]]},"references-count":21,"journal-issue":{"issue":"9","published-print":{"date-parts":[[2024,9]]}},"alternative-id":["10.1002\/ppul.26568"],"URL":"https:\/\/doi.org\/10.1002\/ppul.26568","archive":["Portico"],"relation":{},"ISSN":["8755-6863","1099-0496"],"issn-type":[{"value":"8755-6863","type":"print"},{"value":"1099-0496","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,7,4]]},"assertion":[{"value":"2023-03-22","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-06-14","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-07-04","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}