Lupus Group Aims to Address Clinical Trial Challenges
Life with lupus brings many challenges. The unique nature of symptoms makes diagnosis difficult. It often takes 4 to 6 years and multiple doctors to get an accurate diagnosis. Lupus can affect various organs and joints. And treatment options are limited. A new partnership in lupus clinical research hopes to change that last challenge.1-3
The Lupus Accelerating Breakthroughs Consortium
The Lupus Accelerating Breakthroughs Consortium (Lupus ABC) is a new partnership. It focuses on developing lupus treatments. It brings together multiple experts and agencies to address the needs of people with lupus.1-3
The Lupus Alliance and the U.S. Food and Drug Administration (FDA) created the partnership. Members of Lupus ABC include:1-3
- People living with lupus
- The FDA
- Advocacy groups
- Scientists and clinical researchers
- Medical societies
- Federal agencies
- Companies that develop drugs and medical devices
Why is it important?
Lupus ABC is the first partnership to bring public and private lupus groups together. Teaming up gives lupus clinical trials the best chance for success. Each member brings their expertise. Together, they learn and advance lupus clinical research faster than they can alone.1-3
Working together early in the process reduces competition between groups. The focus is on successfully launching new lupus drugs. Lupus ABC aims to improve the lives of people living with lupus. To honor that commitment, the partnership includes and listens to the voices of those with lupus.1-3
What lupus issues do leaders hope to solve?
There is a significant gap in developing new lupus drugs. Only 3 new lupus-specific drugs have been developed in 70 years. Lupus ABC’s goal is to advance lupus clinical research. Their priority is creating and launching new drugs. Lupus ABC’s focus has 2 parts:1-3
- Improve the evaluation process for new lupus drugs.
- Include the voices and perspectives of people with lupus.
There are problems with the way researchers measure a drug’s effectiveness. This is a barrier to advancing lupus care. Lupus ABC plans to revamp the drug evaluation process. Accurate drug evaluation leads to better outcomes for those with lupus.1,2
Lupus ABC also recognizes the importance of listening to people with lupus. Lupus clinical research needs to address the concerns of the people it affects. Lupus ABC invites those with lupus into the process. Lupus ABC creates goals to align with the needs of the lupus community.1-3
Lupus primarily affects people of color and women. Native American, Black, Asian, and Hispanic/Latino people are 2 to 3 times more likely to be diagnosed with lupus. Women make up 90 percent of those diagnosed with lupus.
There are breakdowns in existing processes for getting lupus drugs from research to market. Lupus ABC hopes to address that gap. Their focus is on developing new drugs for the underserved lupus population.2,3
How can it impact people living with lupus?
Creating Lupus ABC is transformative for people living with lupus. It allows those with lupus to participate in advancing research for their disease. Lupus ABC wants the input of those it seeks to serve. Hearing what is most important to those with lupus ensures the group focuses on those needs. Those with lupus will directly influence the direction of lupus clinical research.1-3
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