Get Involved in Research
Our affiliate, Lupus Therapeutics, is on a “mission possible”: Accelerate drug discovery and diagnostic innovation while advancing health equity, community involvement and ensuring the voices of all people living with lupus are front and center in research.If you are living with lupus, Lupus Therapeutics needs your support to continue our research in personalized treatments and work toward cures. From participating in clinical trials to sharing your story, there are multiple ways to help us advance research.
Learn about the many ways you can participate in research below.
Participating in Clinical Trials
The years 2020 and 2021 have delivered major advancements in lupus treatments approved by the U.S. Food and Drug Administration (FDA), but we need more treatments. Researchers are studying dozens of potential treatment options in controlled clinical trials, and we need participation from a broad range of people living with lupus. Diversity in demographics and how each individual patient’s lupus manifests are essential to ensure our research is rigorous and representative of the entire lupus community.
Patient Advisory Boards
We believe that researchers must understand the very patients for whom they are developing new treatments. By participating in a patient advisory board, you can provide feedback to all aspects of clinical trials, including protocol design, recruitment materials, assessment schedules and many other aspects of how trials are designed, run and communicated about.
Patient Protocol Review Council
The Patient Protocol Review Council is a group of people living with lupus that provide feedback to pharmaceutical companies on their lupus clinical research, specifically before the design of a clinical trial called the “protocol” is finalized. Members of the Lupus Therapeutics Patient Protocol Review Council must apply to and be selected.
Other Ways to Get Involved in Research
The Lupus Brain Bank
Up to 95% of people with lupus experience neuropsychiatric lupus (NPSLE), which includes a wide range of neurologic symptoms — symptoms like not thinking clearly; forgetting things; or even seizures, stroke and psychosis. To gain a deeper understanding of what’s going on in the brain, it’s critical to look at human brain tissue. The Lupus Research Alliance has worked with the Harvard Brain Tissue Resource Center (HBTRC) to develop a program to recover donated brains from deceased individuals with lupus.
Learn about the Lupus Brain Bank
Contact us to get involved in the research process
If you are interested in participating in a clinical trial, a Patient Advisory Board or the Patient Protocol Review Council, please contact us below and we will be in touch to understand your eligibility and ways you can get involved.
