# Lupus Midwest Network (LUMEN)

> **NIH ALLCDC U01** · MAYO CLINIC ROCHESTER · 2020 · $900,000

## Abstract

Project Summary
Knowledge about lupus is biased towards the severe end of the spectrum of the disease because of difficulty
assembling population-based cohorts of persons with lupus. An urgent need to expand the basic epidemiologic
understanding of cutaneous and systemic lupus in four content areas (i.e., natural history, treatment, health
care access, and disparities) was identified by the Centers for Disease Control and Prevention. Our project
addresses these needs using the unique research infrastructure of the Rochester Epidemiology Project (REP).
The REP contains longitudinal data on residents of a 27-county region in Minnesota and Wisconsin.
Nested within the medical record-linkage system of the REP, we have identified population-based cohorts of
583 persons with cutaneous lupus erythematosus (CLE) and 434 persons with systemic lupus erythematosus
(SLE) matched by sex, age, race/ethnicity and county of residence to population-based referents without SLE
or CLE. These cohorts comprise the Lupus Midwest Network (LUMEN). Through the infrastructure of the REP,
LUMEN follows individuals regardless of insurance status and encompasses the full spectrum of care, from
primary care clinics to tertiary specialty care, and maintains an electronic index of diagnoses and procedures
from these records, including all inpatient and outpatient encounters, laboratory measures and drug
prescription data. These resources coupled with a team of researchers and clinicians with decades of
experience conducting population-based research provide an opportunity to leap forward in our understanding
of the natural history, treatment, health care access, and disparities across the full spectrum of cutaneous and
systemic lupus.
Using the LUMEN population based cohorts, we aim to 1) characterize the patterns of comorbidities and their
impact on outcomes among patients with SLE and CLE; 2) describe the prevalence, duration and dose of
opioids in patients with SLE in general, by underlying comorbid pain conditions; 3) determine access to
specialty care and preventive services in patients with SLE and CLE; and 4) examine how neighborhood
socioeconomic deprivation through the area deprivation index, affects comorbidities, opioid use and access to
care.
We also will pilot an innovative, secure, mobile personal health platform (Hugo) that enables patients to access
their information from multiple EHRs and other healthcare information sources, including pharmacy records
and share it with the researchers. The Hugo platform has tremendous potential to facilitate clinical research in
the registry setting. The successful use of Hugo will be proof-of-concept to apply it across multiple CDC lupus
registries and transform how registry-based follow up and clinical research is conceptualized and conducted
throughout the entire CDC lupus registries consortium.

## Key facts

- **NIH application ID:** 10174593
- **Project number:** 5U01DP006491-02
- **Recipient organization:** MAYO CLINIC ROCHESTER
- **Principal Investigator:** Cynthia S Crowson
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** ALLCDC
- **Fiscal year:** 2020
- **Award amount:** $900,000
- **Award type:** 5
- **Project period:** 2020-09-01 → 2022-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10174593

## Citation

> US National Institutes of Health, RePORTER application 10174593, Lupus Midwest Network (LUMEN) (5U01DP006491-02). Retrieved via AI Analytics 2026-05-25 from https://api.ai-analytics.org/grant/nih/10174593. Licensed CC0.

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