Tracking long-term outcomes in childhood lupus
DP22-002 Epidemiology of Lupus: Longitudinal Studies in Population-Based Cohorts - 2022
Following children and teens with pediatric lupus over time to learn how treatments, symptoms, and everyday life affect health and quality of life.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Utah State Higher Education System--University of Utah NIH-funded |
| Lab location | 1 site (Salt Lake City, United States) |
| Project ID | NIH-11135290 on NIH RePORTER |
What this research studies
You would be part of a national pediatric lupus registry that follows kids and teens for years to collect medical information and regular questionnaires. The team will combine clinic data and patient-reported information to study disease features, treatments, and non-medical factors that shape short- and long-term outcomes. They will focus on kidney involvement (lupus nephritis) and neurologic/psychiatric problems, plus pain, disability, quality of life, and how young people transition to adult care. Results will be shared with patients and families to help design better supports and future treatments.
Who could benefit from this research
Good fit: Children and adolescents diagnosed with pediatric-onset systemic lupus erythematosus (diagnosed before age 18) whose families are willing to enroll in the CARRA registry and complete follow-up visits and surveys.
Not a fit: Adults with adult-onset lupus or people without pediatric-onset SLE are not the focus and would not directly benefit from this pediatric registry effort.
Why it matters
Potential benefit: If successful, the work could guide better treatment choices and support services for children with lupus, especially for kidney and brain-related problems.
How similar studies have performed: Long-term clinical registries in pediatric rheumatology have yielded useful insights before, but comprehensive longitudinal data specifically on pediatric lupus nephritis and neuropsychiatric outcomes are still limited.
Where this research is happening
Salt Lake City, United States
- Utah State Higher Education System--University of Utah — Salt Lake City, United States (Active)
Researchers
- Principal investigator: Hersh, Aimee O — Utah State Higher Education System--University of Utah
- Study coordinator: Hersh, Aimee O
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page below.