February 20, 2020
The Lupus Research Alliance (LRA) works hard, often in concert with organizations like the National Minority Quality Forum to alleviate disparities in healthcare among groups at particular risk for lupus, including African-Americans as the group hardest hit by the disease. Several programs educate healthcare providers, patients and the public to better recognize and manage lupus. The LRA is particularly focused on empowering people to to get involved in research and learn about joining clinical studies so potential therapies are tested among the people in greatest need.
Raising Lupus Awareness
- With the National Minority Quality Forum, the LRA co-formed the Lupus Multi-Cultural Engagement Partnership aimed at overcoming challenges in conducting lupus clinical trials. After convening a meeting of key thought-leaders, we developed an extensive report outlining strategies for increasing patient participation in clinical studies and have begun implementing some of the best ideas.
- Multi-Cultural Outreach Task Force – we created the Multi-Cultural Outreach Task Force in 2011 to increase outreach to people in the racial and ethnic groups at highest risk for lupus, including African-Americans, Hispanics/Latinos, Asian Americans, and Native Americans. Members serve as advisers to the LRA on how to increase our ability to help communities throughout the country. The LRA also provides tools to the Task Force to conduct education and awareness events in their communities and online networks.
- The LRA sponsors and exhibits at events that provide health education to racial/ethnic groups such as Black Health Matters Summit, Essence Festival, Healthy Churches, Full Gospel Baptist Church Fellowship International Conference.
- The LRA works with Black Nurses Rock, Inc., the largest minority nursing association in the country that aims “to inspire and empower innovative leaders that will serve and educate vulnerable communities.”
- The LRA partnered with the National Kidney Foundation to create a free online Continuing Medical Education course to educate healthcare professionals about ways to better diagnose, monitor and treat patients with lupus and lupus nephritis.
Clinical Trial Participation
Several of our programs aim to ensure that the makeup of people who take part in clinical trials reflects the diversity of those who have lupus.
- Lupus Therapeutics (LT), an affiliate of LRA, was formed as our clinical arm to speed up the clinical trial process and help inform patients of trial opportunities. LT created and oversees a network of more than 200 clinician researchers at 57 top academic medical centers throughout North America which is conducting 13 clinical studies in various stages.
- Lupus Therapeutics created a pilot program, Patient Advocates for Lupus Studies (PALS) in response to research showing that non-whites in particular prefer to hear health information from peers. It pairs people with lupus who want to learn about trials with a peer or PAL who can speak from experience – has lupus, has been in a clinical study and has trained through the PALS program. Our Manager of Patient Engagement for the PALS program, Caroline Donovan, presented the program as a strategy for engaging diverse populations at the Drug Information Association, Inc. annual meeting. The conference is the largest global multidisciplinary event for professionals involved in the discovery and development of medical treatments.
- The LRA sponsors free educational AWARE for ALL events by Center for Information and Study on Clinical Research Participation (CISCRP). Held around the country, these events enable the public to learn about the clinical research process and how it plays into public health.
- LupusTrials.org is LRA’s website dedicated to information on clinical trials and a search tool to find studies to talk about with your doctor.