Evidence map›Paper›PMID 40654109›Full record

ArticleArthritis care & research2026

Development of a Personalized Visualization and Analysis Tool to Improve Clinical Care in Complex Multisystem Diseases With Application to Scleroderma.

Ji Soo Kim, John Scott, Lauren Fisher, Lauren N Smith, Willie Stewart, Adrianne Woods, Rob Smithwright, Diane Koher, Parastoo Aslanbeik, Aalok B Shah and 9 more

Abstract read
In one paragraph

Article in Arthritis care & research, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

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0cells of the map it votes in
2citing papers in PubMed
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1 · What the graph read from it

What it found

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2 · The registry

The trial behind it

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3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

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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

19 authors.

Ji Soo KimJohns Hopkins University, Baltimore, Maryland.ORCID 0000-0002-4849-4930
John ScottJohns Hopkins University, Baltimore, Maryland.
Lauren FisherJohns Hopkins University, Baltimore, Maryland.
Lauren N SmithGeorgetown University Medical Center, Washington, District of Columbia.
Willie StewartJohns Hopkins University, Baltimore, Maryland.
Adrianne WoodsJohns Hopkins University, Baltimore, Maryland.
Rob SmithwrightJohns Hopkins University, Baltimore, Maryland.
Diane KoherJohns Hopkins University, Baltimore, Maryland.
Parastoo AslanbeikJohns Hopkins University, Baltimore, Maryland.
Aalok B ShahJohns Hopkins University, Baltimore, Maryland.
Brad TibbilsJohns Hopkins University, Baltimore, Maryland.
Samantha I PittsJohns Hopkins University, Baltimore, Maryland.
Ayse P GursesJohns Hopkins University, Baltimore, Maryland.
Yushi YangJohns Hopkins University, Baltimore, Maryland.
Ana-Maria OrbaiJohns Hopkins University, Baltimore, Maryland.ORCID 0000-0001-8644-8567
Antony RosenJohns Hopkins University, Baltimore, Maryland.
Laura K HummersJohns Hopkins University, Baltimore, Maryland.ORCID 0000-0002-4864-4011
Scott L ZegerJohns Hopkins University, Baltimore, Maryland.
Ami A ShahJohns Hopkins University, Baltimore, Maryland.

Funding

Sample Processing and Immunoassay Research CoreP30AR070254 · NIAMS · JOHNS HOPKINS UNIVERSITY · PI Antony Rosen · 2016 to 2026
$8.9M
Autoantibodies Define Scleroderma Subgroups with Distinct Relationships to CancerR01AR073208 · NIAMS · JOHNS HOPKINS UNIVERSITY · PI LIVIA A CASCIOLA-ROSEN, Ami Aalok Shah · 2018 to 2026
$5.2M
Harnessing multivariate patient- and population-level disease trajectories to predict major clinical events in sclerodermaK24AR080217 · NIAMS · JOHNS HOPKINS UNIVERSITY · PI Ami Aalok Shah · 2022 to 2026
$847k
Chresanthe Staurulakis Memorial FundDonald B. and Dorothy L. Stabler FoundationJerome L. Greene FoundationJohns Hopkins inHealth initiativeManugian Family ScholarNancy and Joachim Bechtle Precision Medicine Fund for SclerodermaNIAMS NIH HHS K24 AR080217NIAMS NIH HHS P30 AR070254NIAMS NIH HHS R01 AR073208NIH/NIAMS K24AR080217NIH/NIAMS P30AR070254NIH/NIAMS R01AR073208Sara and Alex Othon Research FundScleroderma Research Foundation
6 · The paper itself

Abstract

objectiveIn complex diseases, it is challenging to assess a patient's disease state, trajectory, treatment exposures, and risk of multiple outcomes simultaneously, efficiently, and at the point of care.

methodsWe developed an interactive patient-level data visualization and analysis tool (VAT) that automates illustration of the trajectory of a patient with scleroderma across multiple organs and illustrates this relative to a reference population, including patient subgroups who share risk factors with the index patient, to improve estimation of disease state. We conducted VAT usability testing with patients and clinicians. We then embedded results from internally cross-validated, Bayesian multivariate mixed models that calculate an individual's risk of critical events, using baseline risk factors, patient-level information in past trajectories in multiple dimensions, and known outcomes from the entire population and relevant subgroups.

resultsThe web-based application aggregates complex, longitudinal data to illustrate patient-, subgroup-, and population-level health trajectories across multiple organ systems. Patients (n = 7) exposed to the VAT reported increased knowledge about their disease and confidence in medical decision-making. Rheumatologists (n = 4) were able to access 8.6 times more data in 81.5% of the time using two-thirds fewer clicks using the VAT compared with an electronic medical record system. Statistical modeling was successfully embedded in the VAT, enabling real-time estimation of a patient's risks of multiple complications.

conclusionSystematic analysis and visualization of individual- and population-level data in a complex disease has potential to improve medical decision-making and warrants further study. Individualized risk estimation disseminated at the point of care may enable targeted screening and early intervention in high-risk patients.

Indexed as

Data VisualizationPrecision MedicineScleroderma, SystemicAdultBayes TheoremFemaleHumansMaleMiddle AgedRisk Factors

Identifiers

PMID40654109
PMCPMC12919693

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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.