# Component B: Improving Pediatric Lupus Care and Outcomes through the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Lupus Registry

> **NIH ALLCDC U01** · UTAH STATE HIGHER EDUCATION SYSTEM--UNIVERSITY OF UTAH · 2020 · $799,214

## Abstract

PROJECT SUMMARY
Systemic Lupus Erythematosus is a systemic autoimmune condition which is life long and can be life threatening.
Up to 15-20% of all SLE patients are diagnosed in childhood (<18 years of age). Although it is estimated that up
to 10,000 children in the United States have pediatric-onset SLE (pSLE), the natural history, treatment patterns
and variation, access to care and disparities in care for this vulnerable population of children have not been well
defined. We propose to expand the existing registry to a goal of 1100 pSLE patients followed longitudinally for
up to ten years, in order to thoroughly assess the biologic/disease related factors, as well as the non-biologic
factors, including health care access, socioeconomic disparities and health care behaviors, such as reduced
medication adherence, which can impact short and long-term pSLE outcomes. Better definition of the
contribution of these risk factors to outcomes will inform future interventions to improve the health and well- being
of patients with pSLE.

## Key facts

- **NIH application ID:** 10003901
- **Project number:** 5U01DP006490-02
- **Recipient organization:** UTAH STATE HIGHER EDUCATION SYSTEM--UNIVERSITY OF UTAH
- **Principal Investigator:** Aimee O Hersh
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** ALLCDC
- **Fiscal year:** 2020
- **Award amount:** $799,214
- **Award type:** 5
- **Project period:** 2019-09-01 → 2022-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10003901

## Citation

> US National Institutes of Health, RePORTER application 10003901, Component B: Improving Pediatric Lupus Care and Outcomes through the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Lupus Registry (5U01DP006490-02). Retrieved via AI Analytics 2026-05-25 from https://api.ai-analytics.org/grant/nih/10003901. Licensed CC0.

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