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

NIH RePORTER · ALLCDC · U01 · $799,214 · view on reporter.nih.gov ↗

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
UTAH STATE HIGHER EDUCATION SYSTEM--UNIVERSITY OF UTAH
Principal Investigator
Aimee O Hersh
Activity code
U01
Funding institute
ALLCDC
Fiscal year
2020
Award amount
$799,214
Award type
5
Project period
2019-09-01 → 2022-08-31