By Rachel Minnick
Lupus is a chronic, often devastating, autoimmune disease that can affect and damage different parts of the body. Currently there is no cure for lupus, however, there are treatments that focus on controlling symptoms and minimizing flare-ups. More than 16,000 new cases of lupus are reported annually in the United States and women of color are two to three times more likely to develop lupus than Caucasians.
For these reasons and others, the Lupus Foundation of America (LFA), a national non-profit organization whose mission is to improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy, has been awarded a grant through the Department of Health and Human Services’ Office of Minority Health (OMH), as part of their National Health Education Lupus Program, called Improving Minority Participation and Awareness in Clinical Trials (IMPACT) for Lupus. IMPACT for Lupus aims to create a national model to improve minority participation and retention in lupus clinical trials.
As part of the grant, the LFA has formed an Action Partnership (AP) team to provide guidance and expert opinion to support the execution of clinical trial education initiatives within IMPACT for Lupus. CISCRP is honored to be part of the AP team and is working alongside the LFA, National Black Church Initiative, Tufts University, AAFP, lupus experts, and other health organizations to provide insight and expertise in the areas of identifying and implementing successful clinical trial participation education and initiatives within minority populations, specifically African Americans with lupus. CISCRP’s role on the team is to provide expert guidance on the development and dissemination of appropriate educational and training materials to support the model. CISCRP is also contributing methods and ideas for how to create greater awareness of clinical research and clinical trial opportunities within minority and under served populations.
Trish Davidson, Senior Director of Education and Research at LFA, comments “We are pleased that CISCRP can offer insight on clinical trial participation trends and engagement ideas as it relates to African Americas and lupus trials. By bringing CISCRP onto the Action Partnership team, we hope to utilize their expertise and experience in implementing effective clinical trial awareness methods.”
The ultimate goal of IMPACT for Lupus is to develop and implement a successful clinical trials education program that will enhance recruitment and retention and encourage minority and/or disadvantaged populations, impacted by lupus that are underrepresented in clinical research, to participate in clinical trials. CISCRP is proud to be supporting an initiative that will help those affected by lupus, and our hope is that we can provide greater awareness of treatment options to those who are struck with this unpredictable and devastating disease.
For more information on the Lupus Foundation of America please visit www.lupus.org.