Clinical Trials

Nora

Outline: At 48 years old, Nora was diagnosed with MS after experiencing a tingling sensation in her feet and knees and numbness up to her hips. Nora has participated in many clinical trials because she wants to provide as much information as possible to hopefully help others in the future.
Background: Nora, age 59, is a single mother and a retiree who used to work in Human Resources. Nora identifies as a heterosexual Hispanic or Latino woman.

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Nora’s first symptoms were a tingling that began in her feet and traveled up to her knees and later persistent numbness up to her hips. A doctor at an urgent care minimized her concerns, so Nora followed up with her primary care doctor. Eventually, she was referred for a brain and thoracic MRI. Nora’s doctor explained that the MRI showed lesions and diagnosed Nora with MS at 48 years old.

After her neurologist advised against a clinical trial with a different medication, he asked Nora if she would be interested in a clinical trial that aimed to test the method of delivery of Rebif. As Nora was using the Rebidose pen, she agreed to be in the research study. In the clinical trial, Nora used the pre-filled syringes and applicator for the first month and the Rebidose pen for the second month. Before and after each month, Nora completed a questionnaire that asked questions regarding skin irritation, the success of the applicator, etc. At the end of the study, Nora noticed that the applicator on the pre-filled syringes was softer. Though she hated touching the syringes, she found that it was much softer on her skin since the pen would cause a round or purple mark if she moved the needle. After the trial, Nora changed her method of injection to the pre-filled syringes.

Nora is currently participating in another observational study where she answers questionnaires in relation to fatigue and COVID. Nora is also involved in a clinical trial that uses virtual hypnosis. While Nora hoped that the hypnosis would help with her fatigue, she did not get hypnotized because she was put into the control condition. She is also involved in another study that investigates genetics and inflammation among people with MS. Nora is curious to see the results of her saliva-based genetic test. She especially wants to know the risk of her daughter getting MS.

The medication trial was beneficial for Nora because not only did she receive two months of medicine, but she was also able to make a real, informed decision of which applicator was better for her. Now that Nora is retired, she is motivated to volunteer as a self-described “living MS guinea pig” for clinical trials. She hopes to provide researchers with as much information as possible so that they can help the next person and/or provide a cure, or at least find out what causes it.

 

Nora says her neurologist recommended against a clinical trial because treatment was working.

Nora says her neurologist recommended against a clinical trial because treatment was working.

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The neurologist had just moved to his new facility, and he always has, in his office, different bulletins of studies. And so, I would always ask him, “What is that about?” And so, I said to him, “Do you think it'd be beneficial for me to go on a clinical trial with other medicine?” And he said, “No because so far, it's working. I wouldn't recommend that. If it wasn't working, then yes, I would recommend a clinical trial with different medication.”

 

Nora worries about the unknown side effects of taking a new medication.

Nora worries about the unknown side effects of taking a new medication.

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I'm, personally, me, I am more scared of the side effects than the actual medicine, the benefits of the medicine. So, I, most likely, would not go to a trial for a new medicine, because I don't know how it would impact me. So yeah. So, for me, I guess that's where I'm scared. I'm a scaredy cat. I want to do new things, natural stuff, but I wouldn't want a medicine that I don't know the side effects on. So that's for me.

 

Nora preferred one way of injecting her medication to the other.

Nora preferred one way of injecting her medication to the other.

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And so yes. So, I went there. After the first questionnaire, she gave me the first method, which was the 12 pre-filled syringes. And they also gave me the applicator. So, they gave me everything. So, I didn't have to worry about using my own. And she told me, “Use our medicine, use our applicator. Don't use yours, because this is our study. So, we don't want you to use yours, because we want to make sure that we're doing it from our supplies.” So, I did. At the end of the first month, and I went back, and then we had a questionnaire. And answered on the skin irritation, or did the applicator work, did it fail at any point in time, did you miss anything? And so, no. So, I answered it correctly.  And because I was doing the pen when I did the pre-filled syringes, I noticed that the button was much softer to press. The part that I don't like with this applicator is, I have to push the applicator back to release the lock. So, when I'm injecting everywhere, then I can use the two hands. But when I'm injecting here, I couldn't use the two fingers. And so, I'd have a hard time. And so that's when the nurse told me, “Just don't inject in your arms. If you don't need to, you have--.” So, I said, “OK.” So then after that one month, then she gave me the Rebidose pen, which is huge. And I said, OK. So, let me do that. And so, I did that for a month. And what I was noti Participating cing is, the button was harder to press. And I was pushing it much deeper into the skin.  And so, I said, even as much as I hate touching the syringes, it's seeming that one is much softer, and it wasn't causing the skin-- because sometimes, when I would put the pen, it was too hard. And it would cause, like, a round mark or a purple, if I moved the needle. So, at the end of the second month, I did the same thing.  Oh, and I returned all the supplies to them, that's right. They wanted the syringes. So, I kept everything, and they collected everything. So, at the end of the second month, I completed the questionnaire. And they obviously said the same questions for the auto-injector as the Rebidose. And then one of the questions was, which one did you prefer? And then that's when I responded that I preferred the pre-filled syringes.  And she says, “OK, you're done. You're done with the clinical trial. Thank you for participating.”

 

Being in a trial helped Nora get and effectively use medication.

Being in a trial helped Nora get and effectively use medication.

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It was such a great benefit for me because it answered my question, which one is better for me? And so then, I finished. For me, personally, I finished my dosage with the pen, and then the following month, I changed the method to the pre-filled syringes. And so, then I said to her, “If you have any other clinical trials where it doesn't involve medicine, I will gladly participate.” So that one was beneficial for me all around, because I got two months of medicine. Plus, I was able to make a real, informed decision of which applicator was better for me.

 

Nora’s concern for her daughter drove her interest in a genetic research study.

Nora’s concern for her daughter drove her interest in a genetic research study.

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And then there is another one with the [INSTITUTON], and it has to do with genetics and the chemicals in the medicine that we're taking. And so that one is kind of interesting because he says that there are certain markers in us with MS, that we should refrain from certain anti-inflammatory medicines. So, , I'm really interested about that. So, when I get back home, because he sent me a kit to—I think it's based on saliva. So, once I get home, I will do that saliva, send it to him, and then he's going to do a test on that. Because my other concern is genetics. I want to know what's—my daughter. I want to know—I have MS, and I want to know, what's the propensity of her getting it? Is there certain genetics? Are there certain markers? So that, hopefully, that we can identify, so that she won’t be getting it.

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