Jun. 23, 2016

Our National Lupus Research Contributions and Achievements

 

The Foundation’s efforts have stimulated advances in lupus research that have provided insight into the underlying causes of lupus and its progression, and created unprecedented opportunities to expand the future knowledge base for the disease.  Data generated by the Foundation’s early research investments have provided important pathways toward identifying people at highest risk for lupus and stopping the disease before it starts.

Read more about our pioneering efforts to advance research on lupus that have led to many important 'first accomplishments' in this field.  

Peer-Reviewed Research and Promising Breakthroughs

We fund research focused on unlocking the mystery of lupus and identifying cures for this devastating disease. Areas of special interest include research aimed at discovering what causes lupus, explaining how it progresses and designing methods to improve early diagnosis and treatment.

Diagnostics

In 2008, a Foundation-funded an investigation of a protein thought to be a lupus biomarker that could be helpful in diagnosing lupus. Findings from this research were used to develop the AVISE™ SLE diagnostic test. It helps doctors accurately diagnose lupus by ruling out other diseases. AVISE™ is more efficient and less expensive than previous tests. The AVISE™ SLE blood test is available through Exagen Diagnostics, Inc.

Adult Stem Cells

With Foundation support, a clinical research trial is underway that is designed to improve health outcomes by using adult stem cell transfusions for people with lupus who are not responding to their medications.  Another Foundation-funded study is investigating the potential for stem cell transplantation to see how long subjects can tolerate treatment, compared with those with lupus who received conventional therapy and who are in clinical remissions, compared to healthy controls. The study involves adult stem cells, which are not subject to government, ethical or religious restrictions.

Biomarkers

We awarded a $500,000, five-year grant in 2014 for research aimed at developing the first urine test to assess disease activity in the kidneys and replace painful biopsies. The project is a new approach to managing lupus that affects the kidneys, known as lupus nephritis, and may lead to the first test for this type of lupus. The biomarkers identified in this study have the potential to be used as targeted therapies for lupus.

Epigenetics

Epigenetics is the study of activity within genes. We provided $200,000 to study the effects of environmental stressors and diet on the severity of lupus flares, identification of therapeutic targets for new lupus treatments, and ability to prevent lupus flares.

Pregnancy

A Foundation-funded research demonstrated that pregnant women with antiphospholipid antibodies (aPL), which are present in one-third of lupus patients and increase risk of blood clots, triggered an inflammatory response in the placenta. The study investigated early miscarriage and late pregnancy complications and its findings may lead to new therapeutic targets to improve pregnancy outcomes in women with aPL.

Personalized Medicine

In 2002, we funded a two-year project studying immune cell defects in lupus.  The researcher is now a leader in the study of defects in immune cells called B cells and targeted therapies in lupus. She is an investigator on the Accelerating Medicines Partnership, the first national cross-sector collaboration working to identify ways to better diagnose and treat lupus. The Foundation continues to support this research through our grant program.

Environmental Triggers

We funded research that found that environmental triggers may result in earlier onset of disease symptoms. Using this data, the researcher is now identifying the genes affected by environmental agents and is determining how these environmental agents and diet contribute to lupus.

Standardized Treatment Plan for Newly Diagnosed Lupus Nephritis in Children

A Foundation-funded grant produced a standardized treatment plan for newly diagnosed lupus nephritis in children. The plan is expected to improve the prognosis of children with lupus nephritis and lead to safer therapies and is endorsed by a majority of pediatric rheumatologists.

Biomarkers in children

A new Foundation-funded study suggests that new approaches to neuroimaging may help identify biomarkers for cognitive impairments for children with lupus nephritis. The study findings add to research that seeks to better understand the neurologic and psychiatric symptoms associated with pediatric lupus.

Improving Clinical Trials of Potential New Lupus Therapies

We increase efficiencies in lupus research by streamlining and modernizing clinical trials.

Patient resource for finding and learning about clinical trials

The Center for Clinical Trials Education (LFA-CCTE™) is the main resource for people with lupus and their families who want to learn about clinical trials. The Center includes a comprehensive search tool for clinical trials, considerations for participating in a clinical trial, and a guide to clinical research terms.

Data sharing to identify trends and gain new insights

Established in 2009, the Lupus Foundation of America Collective Data Analysis Initiative (LFA CDAI™) is a unique collaboration among multiple companies with the shared goal to improve our collective ability to deliver new treatments. LFA CDAI combines data from pharmaceutical and biotechnology–sponsored lupus clinical studies from across the world. Biostatisticians analyze the data to identify trends and gain new insights. The results will help the lupus research community conduct stronger clinical trials that produce more meaningful data, which will accelerate the development of new therapies.

Global standardized lupus disease instrument training

We created the Lupus Foundation of America Professional Online Instrument Training Program (LFA-POINT™ Program) a worldwide professional online instrument-training program that is now used by more than 3,000 clinical investigators in more than 50 countries. It provides training for uniformly assessing the effectiveness of experimental lupus therapies in global clinical trials and greatly increases the probability of the successful development of new lupus treatments. This tool improves consistency in assessments to obtain an accurate assessment of the efficacy of the study treatment.

Advocacy & Government Relations

We rally support for lupus research by working to stimulate new federal funding and support for lupus research.

Department of Defense Medical Research Program

Through the Foundation's efforts, The Department of Defense Congressionally Directed Medical Research Program (CDMRP)now includes a proposal for a lupus specific medical research program. Since 2005, the Peer-Reviewed Medical Research Program has provided funding for lupus research. The Department of Defense has allocated more than $12 million for this research to date.

Federal Congressional Lupus Caucus

Working with our lupus champions in Congress, we helped establish the Congressional Lupus Caucus in the U.S. House of Representatives to support the urgent needs of people affected by lupus and the scientific community working to advance the science of lupus.

First National Lupus Epidemiology Study

Through our public policy initiatives, we secured more than $26.5 million for the National Lupus Patient Registry at the Centers for Disease Control and Prevention to determine the prevalence and incidence of lupus among  populations at risk for the disease, and to measure the burden of disease on individuals, families and society.

Federal Working Group on Lupus

We secured congressional support to establish the Federal Working Group on Lupus at the National Institutes of Health to coordinate lupus activity and exchange information and better coordinate the activities of all federal agencies with an interest in lupus.

National Public Health Agenda for Lupus

The Foundation worked with the National Association of Chronic Disease Directors in collaboration with the Centers for Disease Control and Prevention, as well as leading lupus and public health advocates, to develop the first-ever National Public Health Agenda for Lupus to provide a roadmap to improving care and treatment of lupus.

Action Plan for Lupus Research

In 2014, we spearheaded efforts with the Congressional Lupus Caucus to update the 2007 National Institutes of Health lupus report. The result is the Action Plan for Lupus Research, issued by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), to call attention to areas of scientific inquiry that may lead to more effective treatments and, eventually, cures.

Public Awareness Campaign to Improve Early Diagnosis

We helped to secure more than $3 million in Congressional appropriations for the U.S. Department of Health and Human Services Office on Women’s Health (OWH) to launch an Ad Council public awareness campaign on lupus. The campaign has generated more than $70 million in earned and donated media placements.