… it’s a wonderful opportunity because it affects primarily the African American community for patients to be involved in clinical trials because they get to be part of the research that’s done to bring these therapies to them. They get to have the experience with the therapies early on, um, and they really get to just be a lot more educated about the potential therapies that are being researched and once they are approved and come on the market, they would have been involved in that process.
BDO: So,you’re telling me, so some of the drugs that are actually helping sickle cell patients are a result of a clinical trial where the participants are African Americans?
LD: Yes. And really any drug that is FDA approved, FDA is the approving body for all drugs has to go through a rigorous clinical trial.
BDO: So, what are we looking forward to, within the next five years?
LD: So there are quite a few companies, as I said, doing clinical trials and they’re looking at different mechanisms of the disease that, that, that they can potentially impact with a certain compound. Um, and so there are trials looking at, um, helping with the sickling, helping to stop some of the sickling in sickle cell disease. There are trials that look at what’s called adhesion molecules, which makes red cells and white cells and platelets more sticky and allow them to clot or causing occlusion. There are trials looking at that mechanism of action. There are a lot of trials going on looking at it, you know, a lot of different novel mechanisms of sickle cell disease and how we can target those different mechanisms.
BDO: So, as a parent, let’s say I have a child that has sickle cell and I’m currently possibly looking at a clinical trial, what should I be looking for as a parent for that clinical trial?
LD: As a parent, you know, what parents should look for if they’re considering a clinical trial for them, for their child is to look at the age range. Most trials, you know, have a particular age range in the patient population, so looking at the age range to see if their child fits the criteria from that standpoint to determine if they’re looking at a particular sickle cell genotype, you know, there, there are different genotypes in sickle cell so you know, does the child have this particular genotype or they’re qualified for the trial. Many trials look at the number of pain crisis or visa occlusive crises that they’ve had in the past and so looking at those criteria, so really talking to their physician, looking at all of what’s called the inclusion-exclusion criteria to see if their child is a potential candidate for that trial.
BDO: So, they don’t have to be afraid, right?
LD: They don’t have to be afraid. And again, I think that, you know, if you’ve, if you see a hematologist did, you know, especially as a pediatric patient, but also as an adult patient, you know, you know your physician, you have a good relationship. Hopefully, with your physician, you can really ask open-ended questions. There’s no stupid question. If you have a question about something, ask the question. It’s a good question to ask because patients and parents need to be as informed as possible before they make the decision to participate in a clinical trial where your organization is doing incredible work and I’ll just look forward to the future. Thank you. Thank you so much for joining me. Thank you.