Efforts underway to expand racial and ethnic inclusion in future lupus research studies
Information about burden of disease and quality of life will help guide policy, program and investment decisions to solve the cruel mystery of lupus.
A number of research studies have found that lupus develops more frequently among people from specific racial and ethnic groups. Other studies have also shown that certain complications of lupus, such as kidney disease (lupus nephritis), are more common in specific groups. These differences are called health disparities. Until now, there has never been a coordinated study that uses a standardized method to measure the impact of lupus among all groups in the United States believed to be at risk for the disease.
Through the efforts of the Lupus Foundation of America, Congress provided more than $30 million to fund the National Lupus Patient Registry (NLPR), making it the largest lupus research study ever conducted. The NLPR is the first national lupus study to include representation by all groups at risk for lupus. The registry is managed by the U.S. Centers for Disease Control and Prevention (CDC) and is conducted in collaboration with state departments of health and an agency of the United States Government.
Registries have been established in Georgia, Michigan, New York, California and through the Indian Health Services. Data is being compiled for African Americans, Hispanics, Asians, Native Americans and Caucasians. Two states, Georgia and Michigan have already reported their findings. Indian Health Service presented preliminary data during the 2013 American College of Rheumatology Annual Scientific Meeting. The two remaining sites will present their data in 2015. When the NLPR is completed, it will provide important information for scientists, doctors, industry leaders and policymakers.
It is important to fully understand the impact of lupus, including the total number and frequency of lupus cases, along with the physical, social, emotional and economic impact of lupus. This data will help stakeholders make informed decisions about the future direction of lupus research and investments in potential new treatments to control the many ways lupus can affect the body.
There also is an effort underway to reach out to people with lupus from various groups to educate them about the importance of participating in lupus clinical studies. Because certain complications are more common among specific racial and ethnic groups, it is important that these groups are well represented in trials of potential new treatments for various complications of lupus.
Having reliable data from all groups affected by lupus is very important to improving quality of life. The information helps organizations such as the Lupus Foundation of America, determine strategies, programs and services and awareness campaigns to help solve the cruel mystery of lupus and provide caring support for all people who are affected by this misunderstood and devastating disease.