Evidence map›Paper›PMID 41620777›Full record

ArticlePediatric rheumatology online journal2026

Leveraging the PEDSnet clinical research network and electronic health record data to enhance efficiency of trial enrollment for a rare pediatric rheumatic disease.

Pamela F Weiss, Levon Utidjian, Mitchell Maltenfort, Hanieh Razzaghi, Timothy G Brandon, Cassandra Muir, Cora Sears, Edward J Oberle, Jennifer Cooper, Kevin Baszis and 3 more

Abstract read
In one paragraph

Article in Pediatric rheumatology online journal, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. Article
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

13 authors.

Pamela F WeissDivision of Rheumatology, Department of Pediatrics, Roberts Center for Pediatric Research, Children's Hospital of Philadelphia, 2716 South Street, Room 11123, Philadelphia, PA, 19104, USA. weisspa@chop.edu.ORCID http://orcid.org/0000-0002-9724-0443
Levon UtidjianApplied Clinical Research Center, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
Mitchell MaltenfortApplied Clinical Research Center, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
Hanieh RazzaghiApplied Clinical Research Center, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
Timothy G BrandonDivision of Rheumatology, Department of Pediatrics, Roberts Center for Pediatric Research, Children's Hospital of Philadelphia, 2716 South Street, Room 11123, Philadelphia, PA, 19104, USA.
Cassandra MuirDivision of Rheumatology, Department of Pediatrics, Roberts Center for Pediatric Research, Children's Hospital of Philadelphia, 2716 South Street, Room 11123, Philadelphia, PA, 19104, USA.
Cora SearsDivision of Rheumatology, Department of Pediatrics, Roberts Center for Pediatric Research, Children's Hospital of Philadelphia, 2716 South Street, Room 11123, Philadelphia, PA, 19104, USA.
Edward J OberleDivision of Rheumatology, Department of Pediatrics, The Ohio State University College of Medicine, Nationwide Children's Hospital, Columbus, OH, USA.
Jennifer CooperDivision of Rheumatology, Department of Pediatrics, Colorado Children's Hospital, Denver, CO, USA.
Kevin BaszisDivision of Rheumatology, Department of Pediatrics, Washington University School of Medicine, St. Louis Children's Hospital, St. Louis, MO, USA.
Mary B TothDivision of Rheumatology, Nemours Children's Hospital- Florida, Orlando, FL, USA.
Esi M MorganDivision of Rheumatology, Department of Pediatrics, University of Washington, Seattle Children's, Seattle, WA, USA.
Christopher B ForrestApplied Clinical Research Center, Children's Hospital of Philadelphia, Philadelphia, PA, USA.

Funding

Patient-Centered Outcomes Research Institute CER-2020C1-19212
6 · The paper itself

Abstract

backgroundWe evaluated the PEDSnet clinical research network for study enrollment of juvenile spondyloarthritis, a rare rheumatic disease that includes enthesitis-related arthritis (ERA) and psoriatic arthritis (PsA).

methodsAn electronic health record (EHR)-based typology was developed by an interdisciplinary team to query EHR data for a spectrum of pediatric rheumatic diseases (2009–2023) from 8 PEDSnet centers. The prevalence, characteristics and drug exposures for juvenile spondyloarthritis was explored to gauge feasibility of leveraging the network for study enrollment. Next, the typology was adapted to identify subjects for a clinical trial; the efficiency of EHR typology query was compared to standard screening efforts.

resultsCode sets for 35 pediatric rheumatology conditions were developed to identify potentially eligible subjects in the PEDSnet network. 2510 unique patients with juvenile spondyloarthritis across the PEDSnet health care systems over the years of study were identified. Median age at 1st rheumatology visit was 12.9 years, 50.4% were female, and the median time from 1st to last rheumatology visit was 4.2 years. The spondyloarthritis typology was adapted to screen for eligible patients for the BACK-OFF JSpA trial. Over 3-months at one institution, the query saved 19.5 h and 1.9 h of effort compared to manual screening of all juvenile arthritis or enthesitis-related arthritis patient charts, respectively.

conclusionsResults support the capacity of the PEDSnet clinical research network to facilitate identification of subjects for rare pediatric rheumatic disease studies. Typologies for these diseases were developed and can be leveraged for clinical trial recruitment to improve efficiency.

Indexed as

Arthritis, JuvenileClinical Trials as TopicElectronic Health RecordsPatient SelectionRare DiseasesRheumatic DiseasesSpondylarthritisAdolescentChildFemaleHumansMalePediatricsRare diseaseSpondyloarthritisTypology

Identifiers

PMID41620777
PMCPMC12947445

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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.