The lupus research group participated in an initiative, REACH LUPUS, “Roadmap for Education and Access Care for Chicago Hispanic LUPUS”, funded by the American College of Rheumatology (ACR) to reduce health disparities in a Hispanic-Mexican community in Chicago’s Pilsen community. Our aim is to increase and improve lupus awareness among individuals where there is little knowledge of this condition because of historical self-reported lupus health disparities by this community. To address the project aim a partnership was developed by Northwestern University engaging trusted providers in the targeted community, which included Salud Latina/Latino Health and Casa Michoacan, all with different roles but committed to engage key voices in the community to resolve this disparities gap with a culturally and linguistically competent approach. The project design is multifaceted and includes work provided to the community via support group services and to primary providers by engaging in outreach and education.
We have been awarded an Office of Minority Health grant. The project, Addressing Lupus Health Disparities Adapting Culturally-Competent Community-Based Education Models Through Local and National Collaborative Partnerships, seeks to eliminate racial and ethnic health disparities in lupus in communities locally and nationally through a culturally-competent community-based models through partnerships with the Lupus Society of Illinois, Illinois Public Health Association, American College of Rheumatology, and Alliance for Research in Chicagoland Communities (ARCC). Our field work with REACH LUPUS in Chicago’s Pilsen community provided compelling evidence that lupus is a serious disease with devastating consequences in Latinos/Hispanics where prompt diagnosis and treatment is paramount to preventing early organ damage and death. The newly funded project is called MONARCAS which is the name selected by our initial 14 community pilot project volunteers who called themselves, MONARCAS, a symbol of the butterfly (also the symbol of lupus) that migrates annually from Michoacán, Mexico to the Heartland.
NUgene is a clinical research project currently being conducted at NMH and NMFF. The goal of this project is to collect and store genetic samples (DNA) along with associated healthcare information to form a gene bank. This large bank of samples, currently at 9,600 and growing, is available to researchers who are working to identify genetic contributions to human disease. This allows the researchers to more easily obtain many samples at one time, facilitating genetic research so it can more quickly impact healthcare in the future. All samples and information are de-identified before distribution for research.
Participants in this study have the opportunity to provide Dr. Ramsey-Goldman with access to the information collected from participants through NUgene for research purposes. This will allow her to do additional research in the future on the role that genes play in lupus.
Through a partnership with the University of Alabama and lupus centers around the world, we are currently engaged in research to examine genetic and environmental risk factors for organ damage in people with lupus. We are now recruiting Caucasian, African-American, and Hispanic men and women at least 19 years of age for this study. Study participation involves three annual visits that include a blood draw, urinalysis, and physical exam.
The purpose of this study is to develop a registry or database of information on a large number of newly diagnosed SLE patients who are followed by the 30 SLICC members over time. This registry will provide the long term follow-up of a large diverse population of patients using standard methodologies. This will allow researchers to determine the prevalence and nature of early atherosclerotic coronary artery disease in SLE and to identify associated risk factors.
The purpose of this study is to find out the effects of lupus on blood vessels and on long-term bone conditions. Participants are women with lupus (cases) and women without lupus (controls) who complete three study visits over a five-year period. Study visits include a carotid ultrasound, bone density test, x-ray of the heart, physical exam (cases), urinalysis, and blood testing (including glucose and cholesterol screening).
For more information about the Chicago Lupus Database or our research studies, please contact us via email at firstname.lastname@example.org.