Dr. Susan Slager of Mayo Clinic has long been interested in the genetics of CLL / SLL for all patients.
But sadly, there has been very little research in minority populations with chronic lymphocytic leukemia/small lymphocytic lymphoma.
Dr. Slager, in partnership with Dr. Esteban Braggio (from Mayo Clinic), is hoping to help remedy that knowledge gap with a trial specifically for minorities with CLL.
We spent 10 minutes discussing the “hows and whys” of the research they are leading.
Takeaways:
- CLL is more common in Caucasians.
- African Americans have about half the risk of developing CLL / SLL.
- Asians have extremely low rates of CLL and that rate doesn’t change when they move to North America, suggesting it is a result of genetics and not their environment.
- A few small studies suggest that African Americans with CLL:
- Are diagnosed at younger ages.
- Tend to have more aggressive disease.
- Have a shorter amount of time before needing treatment.
- Tend to have worse overall survival (OS) even when controlling for treatment.
These results need to be validated and explained.
We have some data that African Americans with CLL have different germline (the genes inherited from their parents) genetics than Caucasians. We have almost no information on the genetics of their tumor, (i.e., their CLL) as there have historically been so few genetic samples studied.
The Mayo Clinic study aims to solve this, and the findings could have significant treatment implications. We know that in other diseases such as hypertension, race makes a difference in what therapies tend to work best. We don’t yet know if the same is true in CLL / SLL, at least not yet.
You don’t need to be a Mayo Clinic patient to enroll in this study. Mayo will mail you a kit to collect your saliva for the germline DNA, a tube to collect your blood for tumor cells, and a mailer to send it all back to them free of charge. You will receive $20 for your time. The blood can be drawn locally at any lab and then returned in the mailer along with the saliva specimen to Mayo Clinic.
I have done a very similar trial with Mayo Clinic before. The process was easy, and it was rewarding to know I was helping in some way.
This is very important research. Your privacy will be well protected. If you are an African American CLL / SLL patient, and/or know someone with CLL / SLL who is African American, please advise them of this opportunity. Asians, Latinos, and other people of color are also welcome to apply.
We know that for many good reasons, African Americans have been underrepresented in clinical trials. But this can be resolved as this research proved: Accrual of Black Participants to Cancer Clinical Trials Following a Five-Year Prospective Initiative of Community Outreach and Engagement.
For more information, questions, or concerns please email [email protected] or [email protected].
Basing our understanding about the genetics of CLL / SLL strictly on the findings in Caucasians can only be changed by having people of color participate in studies like this. Thanks for considering enrollment.
Stay strong. We are all in this together.
Brian Koffman MDCM (retired) MS Ed (he, him, his)
Co-Founder, Executive VP and Chief Medical Officer
CLL Society, Inc.
