Scholarlink

Background <p>We 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).</p> Methods <p>An 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.</p> Results <p>Code 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&#xa0;h and 1.9&#xa0;h of effort compared to manual screening of all juvenile arthritis or enthesitis-related arthritis patient charts, respectively.</p> Conclusions <p>Results 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.</p>

错误：搜索内容不能为空，请输入英文关键词
错误：关键词超出字数限制，请精简
高级检索

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

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2026年1月31日

查看全文
  • Pamela F. Weiss,
  • Levon Utidjian,
  • Mitchell Maltenfort,
  • Hanieh Razzaghi,
  • Timothy G. Brandon,
  • Cassandra Muir,
  • Cora Sears,
  • Edward J. Oberle,
  • Jennifer Cooper,
  • Kevin Baszis,
  • Mary B. Toth,
  • Esi M. Morgan,
  • Christopher B. Forrest

摘要

Background

We 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).

Methods

An 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.

Results

Code 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.

Conclusions

Results 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.