In this MD Newsline exclusive interview with dermatologist Dr. Victoria Barbosa, we discuss the latest research on central centrifugal cicatricial alopecia (CCCA) diagnosis, prognosis, and treatment. We also discuss how to improve diversity and inclusion in dermatology clinical trials.
Is there any research that excites you or that you think is important for physicians to know related to the diagnosis and treatment of CCCA?
Dr. Victoria Barbosa:
“The research into CCCA is really still in its infancy. We were so excited a few years ago when an international team revealed for the first time that CCCA is a disease for which some people have a genetic mutation.
More recently, a study out of Johns Hopkins has shown that people with more limited forms of CCCA have different gene expression than people with CCCA with really severe, complete scalp involvement. This finding could have tremendous applications for how we counsel patients, how we expect their disease to progress, fine-tuning diagnosis, and, hopefully, in the future, will also help impact how we treat these patients.
There’s so much important work that still needs to be done. This is a very exciting time to be involved in hair loss research.”
How do you think we can increase the recruitment and enrollment of diverse groups in dermatology clinical trials?
Dr. Victoria Barbosa:
“It is so important that we have adequate representation of people from different racial and ethnic backgrounds in clinical trials. We first have to recognize that it can be very difficult to recruit Black patients to clinical trials because of the negative history that precedes us. So, we have to be very intentional about how we approach these trials because it’s to everyone’s benefit to have active enrollment so that we can accurately gauge treatment response.
So I think there are a few things that we have to keep in mind. First, patients have to be aware that clinical trials exist. So we have to think about how we get the word out. Is it just a sign posted at the back of the clinic? Are we leaving it up to physicians to decide who to invite to a study? Are we being aggressive with our marketing strategy for these clinical trials?
More importantly, we have to think about the trust factor because, over many decades, unfortunately, the trust among brown and Black people in the healthcare system has been eroded, and that’s especially true for medical research. And so, we have to be active participants in rebuilding that trust.
And a big part of that is taking a good look at the clinical research staff. Is the diversity that you’re looking for reflected in the clinical trial staff that is going to be interfacing with the patients? That is an easy fix and a first step toward building trust.
It’s also important to communicate with patients that the purpose of clinical research is ultimately not for your own good or for your research but that you’re trying to improve their health. It’s important that patients know that we put their health first at all times. And sometimes, patients have the impression that doctors are trying to further their research more than they’re trying to treat the patient.
So, being open and honest about your intention to enroll someone because you think that this is something that’s going to be important for them and the community goes a long way.
There’s one more thing I want you to keep in mind. Sometimes, people have barriers that keep them from participating in clinical research. Sometimes there are financial or logistical barriers. ‘How much time is this going to take? How many times a week am I going to have to come in? Am I going to have to miss work? Am I going to have to pay for transportation or parking to get there?’
So I think it’s important to think about these questions that your patients are going to have as you plan your study so that you provide convenient hours and an adequate stipend, and you address the additional barriers that people might have to be able to participate.”
Responses have been condensed and lightly edited.