Lori
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The study Lori’s daughter participated in was “a confirmation kind of study” of a special treatment track for people with Down’s syndrome and leukemia. When the doctor told Lori he was doing the study to continue research he had done on effective treatments for children with Down’s syndrome and leukemia, Lori knew she “could have said no… But to sign up to give my information to him to continue to work and confirm that, by all means I'm going to help him do that… he found protocol that's probably saved my daughter. So, he can certainly take all the data he wants from me.” Lori appreciated receiving a roadmap of the study treatment so she and her daughter could move step by step through the treatment phases: “For somebody like me who needs to be in control of something, or else I was losing it, this was fabulous because I could go, "Okay, where's the blood work? Okay, she got..." and I could pretend to be a doctor.”
Lori wishes that studies could help parents understand what to focus on: “Where there's a possibility to take it from science land into parent land would be really, really helpful--and it was still--it was very sciency, there was probably two-thirds of the pages I didn't know what it was, but it was like, "That doesn't matter, this doesn't matter, you look here, focus on this part," and that's the way that should be."
Lori describes how the consent process could be more clear.
Lori describes how the consent process could be more clear.
And every disease isn't like that, every study isn't like that. But where there's a possibility to take it from science land into parent land would be really, really helpful--and it was still--it was very sciency, there was probably two-thirds of the pages I didn't know what it was, but it was like, "That doesn't matter, this doesn't matter, you look here, focus on this part," and that's the way that should be." And it was great, and I could question people.
Lori says she is happy for her child’s data to be used for research.
Lori says she is happy for her child’s data to be used for research.
So, if we had to be at [HOSPITAL] and I had to deal with stupid conversations and all that stuff, I was in the right place, because he had done the preliminary research years and years ago, to determine what was working for the kids with Down’s syndrome. So, again, just like I'm doing the study with you guys, I could have said no, and she probably would have had a very similar treatment plan because it was what he had figured out was what they were using. But to sign up to give my information to him to continue to work and confirm that, by all means I'm going to help him do that. Because he found the protocol that's probably saved my daughter. So, he can certainly take all the data he wants from me. So, again, the study wasn't so much a trial, I think, as it was more a follow-up kind of thing—I'm probably using the wrong word.