Evidence map›Paper›PMID 37401889›Full record

Observational studyPediatric pulmonology2024

The US national registry for childhood interstitial and diffuse lung disease: Report of study design and initial enrollment cohort.

Rebekah J Nevel, Gail H Deutsch, Daniel Craven, Robin Deterding, Martha P Fishman, Jennifer A Wambach, Alicia Casey, Katie Krone, Deborah R Liptzin, Michael G O'Connor and 26 more

Abstract readObservational StudyMulticenter Study
In one paragraph

Observational study in Pediatric pulmonology, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.

0numbers the graph read from it
0cells of the map it votes in
17citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

17 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. Review
  5. Article
  6. Article
  7. Article
  8. Review
  9. Review
  10. Review
  11. Observational
  12. Article
  13. Pediatric Diffuse Lung Disease in Infants: Imaging Findings and Histopathologic Correlation.Radiographics : a review publication of the Radiological Society of North America, Inc · 2024
    Review
  14. Article
  15. Review
  16. Article
  17. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

36 authors.

Rebekah J NevelDepartment of Child Health, Pediatric Pulmonary Medicine, University of Missouri Children's Hospital, Columbia, Missouri, USA.ORCID http://orcid.org/0000-0001-9386-3398
Gail H DeutschDepartment of Laboratory Medicine and Pathology, Seattle Children's Hospital, University of Washington Medical Center, Seattle, Washington, USA.ORCID http://orcid.org/0000-0002-0571-0285
Daniel CravenPediatric Pulmonology, Rainbow Babies & Children's Hospital, Case School of Medicine, Cleveland, Ohio, USA.ORCID http://orcid.org/0009-0009-0194-3207
Robin DeterdingSection of Pediatric Pulmonology, Department of Pediatrics, University of Colorado School of Medicine, Children's Hospital of Colorado, Aurora, Colorado, USA.
Martha P FishmanDivision of Pulmonary Medicine, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts, USA.
Jennifer A WambachEdward Mallinckrodt Department of Pediatrics, Division of Newborn Medicine, Washington University School of Medicine, St. Louis Children's Hospital, St. Louis, Missouri, USA.ORCID http://orcid.org/0000-0002-9299-0499
Alicia CaseyDivision of Pulmonary Medicine, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts, USA.ORCID http://orcid.org/0000-0002-3566-9690
Katie KroneDivision of Pulmonary Medicine, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts, USA.ORCID http://orcid.org/0000-0001-5008-3121
Deborah R LiptzinSection of Pediatric Pulmonology, Department of Pediatrics, University of Colorado School of Medicine, Children's Hospital of Colorado, Aurora, Colorado, USA.
Michael G O'ConnorDepartment of Pediatrics, Division of Pediatric Pulmonology, Vanderbilt University Medical Center, Nashville, Tennessee, USA.
Geoffrey KurlandDepartment of Pediatrics, Division of Pulmonology, University of Pittsburgh School of Medicine, Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania, USA.
Jane B TaylorDepartment of Pediatrics, Division of Pulmonology, University of Pittsburgh School of Medicine, Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania, USA.ORCID http://orcid.org/0000-0003-4992-520X
William A GowerDepartment of Pediatrics, Division of Pediatric Pulmonology, University of North Carolina School of Medicine, Chapel Hill, North Carolina, USA.ORCID http://orcid.org/0000-0001-5863-7379
James S HagoodDepartment of Pediatrics, Division of Pediatric Pulmonology, University of North Carolina School of Medicine, Chapel Hill, North Carolina, USA.ORCID http://orcid.org/0000-0003-3938-0330
Carol ConradPulmonary Medicine, Pediatrics Stanford University School of Medicine, Palo Alto, California, USA.ORCID http://orcid.org/0000-0001-5202-2998
Jade B Tam-WilliamsPulmonary and Sleep Medicine, Children's Mercy Hospital, Kansas City, Missouri, USA.ORCID http://orcid.org/0000-0002-0958-6277
Elizabeth K FiorinoDepartment 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.
Samuel GoldfarbDepartment of Pediatrics, School of Medicine, Division of Pulmonary and Sleep Medicine, University of Minnesota, Minneapolis, Minnesota, USA.
Sara C SadreameliDivision of Pediatric Respiratory Sciences, Johns Hopkins University, Bethesda, Maryland, USA.ORCID http://orcid.org/0000-0001-9167-6994
Lawrence M NogeeDivision of Pediatric Respiratory Sciences, Johns Hopkins University, Bethesda, Maryland, USA.ORCID http://orcid.org/0000-0003-0540-8083
Gregory MontgomeryPediatric Pulmonology, Department of Pediatrics, Indiana University School of Medicine, Riley Hospital for Children at Indiana University Health, Indianapolis, Indiana, USA.
Aaron HamvasPediatrics, Ann and Robert H Lurie Children's Hospital of Chicago Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.ORCID http://orcid.org/0000-0002-5749-7797
Theresa A LagunaPediatrics, Ann and Robert H Lurie Children's Hospital of Chicago Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Manvi BansalDivision of Pediatric Pulmonology/Sleep Medicine, Keck School of Medicine, Children's Hospital Los Angeles, University of Southern California, Los Angeles, California, USA.ORCID http://orcid.org/0000-0002-3030-7754
Cheryl LewDivision of Pediatric Pulmonology/Sleep Medicine, Keck School of Medicine, Children's Hospital Los Angeles, University of Southern California, Los Angeles, California, USA.
Maria SantiagoDepartment 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.ORCID http://orcid.org/0000-0002-2853-0615
Antonia PopovaPediatrics, University of Michigan C. S. Mott Children's Hospital, Ann Arbor, Michigan, USA.
Aliva DeDivision of Pediatric Pulmonology, Columbia University Irving Medical Center, Vagelos College of Physicians and Surgeons, New York, New York, USA.
Marilynn ChanPediatric Pulmonology, University of California San Francisco Benioff Children's Hospital, San Francisco, California, USA.
Michael R PowersPediatrics, Doernbecher Children's Hospital, Oregon Health & Science University, Portland, Oregon, USA.
Maureen B JosephsonDepartment of Pediatrics, Division of Pulmonary and Sleep Medicine, Children's Hospital of Philadelphia, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.
Devaney CamburnDepartment of Pediatrics, Division of Pulmonary and Sleep Medicine, Children's Hospital of Philadelphia, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.
Laura VossDepartment of Pediatrics, Division of Pulmonary and Sleep Medicine, Children's Hospital of Philadelphia, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.
Yun LiDepartment of Biostatistics, Epidemiology & Informatics, Perelman School of Medicine of the University of Pennsylvania, Philadelphia, Pennsylvania, USA.
Lisa R YoungDepartment of Pediatrics, Division of Pulmonary and Sleep Medicine, Children's Hospital of Philadelphia, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.ORCID http://orcid.org/0000-0003-3297-8532
chILD Registry Collaborative

Funding

Midcareer Investigator Award in Patient-Oriented Research in Pediatric Rare Lung DiseasesK24HL143281 · NHLBI · VANDERBILT UNIVERSITY MEDICAL CENTER · PI YOUNG, LISA R. · 2018 to 2022
$540k
NHLBI NIH HHS K24 HL143281
6 · The paper itself

Abstract

introductionChildhood 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.

methodsThis longitudinal, observational, multicenter registry utilizes single-IRB 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.

resultsWe 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%).

conclusionThis 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.

Indexed as

Lung Diseases, InterstitialRegistriesAdolescentChildChild, PreschoolCohort StudiesFemaleHumansInfantLongitudinal StudiesMaleProspective StudiesResearch DesignUnited Statesinterstitial lung diseaseNEHIrare lung disease

Identifiers

PMID37401889
PMCPMC10764638

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.