National Lupus Patient Registry
Determining how common lupus is and identifying those at risk
In 2003, Congress established the National Lupus Patient Registry at the Centers for Disease Control and Prevention (CDC). The Registry conducted the first comprehensive studies that measure how widespread lupus is in the U.S. and that determine who is at risk of developing the disease. These studies continue to inform our efforts to combat lupus.
In the years leading up to 2003, the Lupus Foundation of America advocated for a government-funded study that would help the lupus community better understand who gets lupus and how it affects people with the disease. And our work didn’t stop when the Registry was created: we continue to advocate for increased funding for the Registry and work with the CDC to maximize the impact of every dollar it receives.
To date, our advocacy has secured more than $63 million in congressional funding for the National Lupus Patient Registry.
Most recently, Congress funded the Registry with $7.5 million for fiscal year 2019, a $1 million increase from 2018. This increase is a clear indication that Congress recognizes the importance of the Registry’s findings, which include:
- Black women with lupus are diagnosed at a younger age and are at a higher risk of developing lupus kidney disease and end-stage kidney disease compared to white women.
- In New York, 50% of people of color with lupus developed lupus kidney disease, compared to 25% of whites.
- Lupus is about as common among American Indian and Alaska Native women as it is in African American women, the group that is mostly likely to develop lupus.
in congressional funding since 2003
currently being funded by the Registry
published based on Registry data
Currently funded studies and their research
As of 2018, the National Lupus Patient Registry is funding research in California, Georgia, and Michigan. The goals of these studies are to:
- Follow the treatment history, access to health care, and natural history (severity of disease, death rates, etc.) of those in the studies.
- Support the collection of patient-reported outcomes such as level of fatigue and severity of joint pain, as well as the collection of skin, urine, and tissue samples.
- Better understand racial, ethnic, and socioeconomic disparities in lupus.
- Support collaborative use of data for researchers across the U.S.
How our advocacy supports the National Lupus Patient Registry
Funding for the National Lupus Patient Registry must be appropriated by Congress every year. Because budgets are tight, we need advocates who are willing to tell their members of Congress about how important this program is to people with lupus and their loved ones.
Sign up to become an advocate to ensure you never miss an opportunity to contact your members of Congress in support of important lupus priorities like the National Lupus Patient Registry.