Patient Voice: Participating in a Clinical Trial

November 6, 2009 – What motivates a person to participate in a clinical trial? CAF asked Tracy Antonelli, an individual with thalassemia intermedia, why she chose to participate in a clinical trial about pain in thalassemia and what she thought of the experience.

Tracy Antonelli

To Learn More About the Assessment of Pain in People with Thalassemia Study, click here.

To Find a Thalassemia-Based Clinical Trial, click here.

Above, Tracy Antonelli

Right, Tracy Antonelli with husband, Patrick

Tracy & Patrick

CAF: The Assessment of Pain in People with Thalassemia study is a study that is intended “to assess the prevalence and severity of pain, common pain sites, and the impact of pain on functioning and well-being in people with thalassemia who receive regular blood transfusions and in people with thalassemia who do not receive regular blood transfusions.” Why did you decide to participate in this trial?

Tracy: I participated in the Pain Assessment study because I think it is asking a really interesting and important question, and it’s something I have often wondered about myself. Even though this is just a pilot study, it will hopefully provide insights that will lead to further research in this important area.

Do you believe that you yourself have pain that is related to thalassemia, its complications, or the treatment for thalassemia or its complications?

I don’t know if I would call it “pain,” but I certainly believe that I have some “discomfort” that is related to thalassemia, in particular in relation to my level of anemia. I can’t say for sure, but sometimes I think I feel the way I’m told a thal major patient feels around the time they are due for a transfusion – headaches, feeling like my bones hurt, other aches, etc.

What did you think of the study? Was it relatively convenient, easy, etc.?

The first visit for the study was a “piece of cake!” I simply met with my nurse, reviewed and signed the consent form, and answered some questions. There are no blood tests or exams. The follow-up visits are even easier because they are over the phone. I felt comfortable talking about the issues with my nurse. Sometimes it’s hard to talk about issues related to thal because I don’t ever want to sound like a “complainer” – but the whole purpose of this study is to be honest and accurate about your pain!

Would you encourage other individuals who are intermittently- or non-transfused to participate?

As a patient with thal intermedia, I am always excited to hear about research studies that apply to this special type of thal. Not everyone realizes that thal intermedia is its own “thing” with its own set of concerns. There are fewer of us, so it’s even more important that we participate in research. So, since this trial is looking at all kinds of thalassemia, both transfused and non- or intermittently-transfused, I wanted to help them meet their recruitment goals as part of the “not regularly transfused” category.

In addition, I work in the field of clinical research. I manage research studies and help investigators carry out their own studies. Throughout my career, I have found that the most difficult part of getting studies done is recruitment! I know we are all busy, but it is very important that people take the time to participate in research studies. That is the only way we will make advances in medicine. The patients before us did it, and that’s why we’ve come so far in caring for people with thalassemia. Now it’s our turn.

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