August 8, 2019

In five pilot cities, people with lupus who are thinking about taking part in a clinical trial can now join LRA’s Patient Advocates for Lupus Studies (PALS) program created by our affiliate Lupus Therapeutics.

The program will pair adults with lupus interested in learning about clinical trials with a peer or “PAL” who has lupus, has been in a clinical study, and who has been trained through the PALS program.

Lupus Therapeutics teamed up with five medical centers belonging to our national Lupus Clinical Investigators Network (LuCIN) to develop the program and train our PALS.  Currently the program is offered at Columbia University; University of Mississippi; University of North Carolina, Chapel Hill; Emory University; and Northwestern University.  If you are being treated at one of these sites, ask your healthcare team for more information.

A trained PAL, Amanda Young comments, “When you’re trying to decide if you should join a clinical study, you can ask family, your doctor, your friends for their opinion. But you don’t trust their answers as much as you would someone who’s gone through a study already.”

New Treatments Depend on Patients

PALS was formed to address one issue that slows down new treatments for lupus. Many trials do not have enough patients and do not represent all the diverse groups affected by lupus.  Without evidence that the drug is safe and works among these people, the FDA cannot approve its use.

Our hope is that after talking with a PAL, people will better understand how trials work, how well you’re taken care of and why participation is so important.

Another PAL, Charla Perry explains why she opted to take part in a clinical trial.  “I was so down about lupus. I felt there was no research, no one who really cares. But after joining a trial, I realized there are wonderful people out there at top research hospitals and laboratories.   And I know I’m doing my part.  Each time I gave blood, I knew that sample may help make a new drug. I gave the doctors and scientists a piece of my soul to advance treatments.”

Just the First Step

Our goal is to expand PALS to other LuCIN sites around the country. So stay tuned for updates on when PALS will be available in your city!