Participating in Clinical Trials at CHOP

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Kiara:
Hi, my name is Kiara and this is my daughter Alice. We're patients at CHOP.

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We've also been part of the research going on at CHOP, and if it wasn't for Brown and Black families participating in research, results of these studies might not benefit people like us.

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Every day, more and more families like us are participating in research.

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In every case, our family being involved makes research findings relevant to us. It's that simple.

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We believe it's our turn to give to CHOP.

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That is why I signed us up for the research participant registry website to be contacted by email or text message if there's a study in which we could participate.

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A lot of studies look at healthy children and do not involve any medicine.

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They look at how children grow and what environments are most supportive to children physically and emotionally.

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I'm here to ask you to sign up like we did, to be notified if there's a study where you and your child can take part. But first, I want to hear from an actual researcher at CHOP.

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Susan Furth, MD, PhD
Hi, I'm Dr. Susan Furth, Executive Vice President and Chief Scientific Officer of Children's Hospital of Philadelphia Research Institute.

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Each year, doctors and scientists across the nation conduct research in areas from health conditions to safety to healthy living.

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Research helps create improvements in medical care, preventative care like better car seats and sports helmets, and anticipatory care, helping parents understand their child's growth, development, and behavioral health.

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Doctors and researchers cannot do this work without you. You can make a difference for your family and for other children and bring your unique voice and experiences to help create a better future.

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Participation of patients with medical conditions, as well as people without any medical conditions, is important.

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By enrolling in the Research Discovery Finder registry at CHOP, you'll receive information about opportunities to participate in research at Children's Hospital of Philadelphia.

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And that's it, there's no obligation to do anything else.

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You'll receive information from time to time about a study that may be just right for you and your child.

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If you'd like to learn more about that study, you simply call or email the person listed as the contact. It's that simple.

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Kiara:

My daughter, Alice, and I participated in a study for her asthma, and it was pretty memorable because it was at the height of the 2020 COVID-19 pandemic.

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It involved telemedicine visits, text messages, phone calls, and these small little devices that went on each of her inhalers.

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She has two inhalers: one that is for use-as-needed, and one that is for everyday use.

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With these two little devices and a matching app on my phone to go with it, it told us whether her inhaler was properly controlling her asthma, if there was an overuse, and whether or not it was under control.

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With that, I actually learned how to better care for her and her asthma.

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We didn't really have any concerns about participating. There weren't any issues with travel, transportation, or anything.

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Everything was pretty self-explanatory. Again, we were doing this during the 2020 pandemic, so nobody's really going anywhere.

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It was pretty easy and simple to use. There might have been a bit of a few miscommunications on how to set everything up, but once we figured it out, really easy, smooth sailing.

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If there is any families that are concerned about doing research, I fully understand because in this country there has been a history of research impacting Black and Brown families in a negative way.

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But I would say, first and foremost, is reach out to fellow family members and friends who have also participated in research studies in the past.

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Also, remember that these research studies are 100% voluntary. You do not have to participate, at any time you can decline if you do not feel comfortable.

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Thanks for watching this, and for thinking about joining us to help our children benefit from research.