Ask The Expert: The Real Truth About Clinical Trials And Sickle Cell Disease

BDO sat down with expert Laurie Debonnet, a pediatrician and global medical director who works with the pharmaceutical industry and who currently does sickle cell disease research to talk about the myths and the truth regarding clinical trials.

BDO: Can you tell us just some of the things that you’ve found in the past and what are you looking forward to in sickle cell research?

LD: So, when I was in, in practice, I was seeing sickle cell disease patients. There wasn’t a lot out there in terms of therapies and it’s really exciting now there are a lot of companies who are doing research in sickle cell disease and so the potential treatments that could come out to treat sickle cell disease in the future, the field is very active and so that’s very exciting.

BDO: So as a patient, where can a patient go to find the best quality research once they found out that their child has sickle cell?

LD: So really in terms of where patients and families can go there, the first resource really should be their physician. You know, a patient with sickle cell disease should have a hematologist that’s experienced in sickle cell disease. So that’s really their first resource I would say, but if they’re interested in learning about clinical trials, like I said, there are a lot of companies who are doing clinical trials right now. Um, you could go to the company website, um, and you know, you can probably click clinical trials and they’ll probably take you to clinical trials. I know for our company, in particular, we have a call center, so, you can call the companies, call center and the call center should be able to tell you about clinical trials, how to access the websites that are specific to clinical trials for sickle cell disease. I’m glad you brought that up. There’s a lot of misconceptions about clinical trials that are out there.

BDO: Can you speak about just to the everyday person, like what are clinical trials? Just dispel all the myths surrounding clinical trials.

LD: Well, in terms of clinical trials, I mean there has been a lot of history that people can look at clinical trials negatively. And certainly in our community there have been some injustices and clinical trials done quite a long, long time ago. Clinical trials have really evolved in that they have to follow certain criteria, they’re many, many monitoring committees that monitor the patients in the clinical trials. Patients have to sign an informed consent so they have to understand why they’re being asked to participate in this trial, what’s expected of them. And so the process has changed in terms of, you know, the patient is really at the wheel making the decision making a very informed decision, the patient or the parents if it’s a child. And so there, there are a lot of guidelines in place so that trials are conducted ethically and the patients are kept safe, um, when, when they’re participating in.

BDO: So, why is it important that our community, the African American community being involved in more clinical trials?

LD: Well, it’s a great question. And you know, for years I’ve heard, you know, African Americans are underrepresented in clinical trials and I think some of that may come from some mistrust for, again, for things that had previously happened. But I think especially in sickle cell disease,…