What Should SCD Warriors Know Before Joining a Clinical Trial?

Sickle Cell

Dec 27

More Programs and Publications Featuring Dr. Marwan Shaikh

In this program:

Sickle cell patients may want to consider clinical trial participation for their care. Dr. Marwan Shaikh and hematology nurse practitioner Maya Bloomberg share about patients who may benefit from clinical trials and why BIPOC representation is vital for optimal clinical trial results.

Transcript

Interviewer:

So with the clinical trials, what are some things that patients should consider before deciding to join a clinical trial?

Dr. Marwan Shaikh:

Well, I mean depends first finding an available trial, so one website that you can go to is if you want to do your own search is clinicaltrials.gov, and that's an international database of clinical trials are open, and when you look at sickle cell disease right now, there are over 800 trials in the entire world right now. In the United States, there's almost 600. So you know we're doing the bulk of the work here, and so every trial is going to have inclusion and exclusion criteria that you're looking at, and so what they're trying to do is focus on a subset of patients and try to eliminate confounding things, and you try to make sure we have a group of patients that we know that this disease will or this treatment will benefit, and so they'll have criteria that they're looking for, so either an age criteria or how many hospital admissions or how many re-admissions, how many pain crisis somebody's having...what kind of prior therapy that someone's been on beforehand, if it's starting off with a new treatment, or if they've been through hydroxyurea (Hydrea), if they've been through L-glutamine (Endari) and everything before starting on the medicine. If someone...essentially, if someone's not being controlled on the medicine that they're on right now, then we need to start considering a trial if we're running out of options, starting out with standard of care and then progressing into one of those when it comes to like gene therapy or gene editing and a transplant. Those kinds of things are, if you can get on a clinical trial for those you know, that would be awesome, because if you're running out of this idea, you need something to help keep going.

Maya Bloomberg, APRN:

And that's important that the clinical trials its minority presentation is so important when we look at clinical trials as a whole, when you look at people of color and Black Americans, it's only, I think, 17 percent of Black Americans are involved in clinical trials compared to Caucasians and Hispanics and what not. And what people don't realize is when you're doing clinical trials and you're looking at the results, you want the people who are going to be using that medication involved from the clinical trial, because when they look at safety information and efficacy or how well the product is actually working, we're generalizing results based on the people who are enrolled, so when you don't have enough minority representation in a clinical trial, you might not have the same experience if you were to get prescribed that medication once it becomes commercially available, so there's so much distrust and there are so many instances of just medical exploitation through the years, with Tuskegee airmen and so much that I understand where that distrust lies, but at the end of the day, understanding why it's important to participate in clinical trials and what your contribution makes and what that means for the general population of sickle cell patients, I think will get more people a little bit more excited and interested in potentially enrolling in trials.

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