Lupus Registry
Development of a South Carolina Lupus Registry
Did you know that . . .?
- Based on a five-year estimate, the average charge for medical care for a person diagnosed with lupus in South Carolina is $6,850 over the average per capita income. That is more than 29% of the average house holds' per capita income.
- Since 1996, medical charges for lupus patients have totaled more than $1,565,347,206 in South Carolina alone.
- More than 90 percent of people with lupus are women.
- Symptoms related to lupus account for 10 out of the 15 top diagnostic categories for emergency room visits.
What is a “registry?” [pronounced: réjjistree ]
A registry is a database of records where records are kept on somebody or something.
Why have a “Lupus” registry?
Lupus is a disease in which the body’s immune system attacks healthy tissues and organs such as joints, kidneys, skin, central nervous system, heart, and lungs. It is a chronic inflammatory auto-immune disease.
What are some facts about lupus?
- Lupus occurs 2 to 3 times more often in African Americans than any other ethnic background.
- More than 90% of those diagnosed are women, yet men, women, children, and the elderly are not immune.
- Although there are increasingly more helpful therapies are available than ten years ago, there is no cure for Lupus.
- Lupus symptoms and diagnosis methods vary.
- Although relationships between lupus and various other diseases take place, what causes Lupus has not been identified.
Why South Carolina?
Lupus has very much become 'a live' in the state of South Carolina in the past year. The development of a Lupus Registry is the perfect opportunity to take advantage of the momentum started. Many organizations across the state are striving to help those afflicted and their families understand and deal with this life-threatening disease.
What is the goal of the development of a lupus registry in South Carolina?
The development of a lupus registry will provide ongoing access for researchers on the impact of SLE on communities in South Carolina. The registry database will also:
- Help determine how many people and their families are afflicted with Lupus in South Carolina.
- Help determine how many new cases occur each year.
- Help provide an ongoing process in which the medical community can better engage SLE patients.
Is this the first registry of its kind?
No. There are some research groups that have implemented existing registries. A few include areas such as Georgia, North Carolina, and Michigan. For more information on current and ongoing lupus registry projects, contact the Centers for Disease Control and Prevention (CDC).
How can you help?
You can participate! We need individuals and families with at least 1 living member diagnosed with Lupus or some form of Lupus (i.e. Systemic Lupus SLE). You do not have to travel. There is no monetary compensation, and you do not have to donate a blood sample. All you have to do to participate is complete a questionnaire!
We need church groups, lupus support groups, clubs, health teams, and any other interested organization to help spread the word! For more information on how you or your organization can participate, contact us via email at info@lupuscsc.org. Call us at 1-803-563-8117. Or visit the link to the online survey at STOPLUPUSNOW.
YOUR LUPUS MATTERS!
As a participant, you become part of a large part of a team dedicated to finding the causes and cures for Lupus.
{"This work is partially supported by an ASPIRE grant from the Office of the Vice President for Research at the University of South Carolina.”}