Each person’s situation is unique, and their reasons for wanting or not wanting to participate in a trial may vary
Parents and adult patients ask: should I agree to take part in a clinical trial?
For SCID patients and their caregivers, understanding the options available, including clinical trials, is crucial. As families navigate the complexities of Hematopoietic Stem Cell Transplantation (HSCT), or a bone marrow transplant (BMT), they become aware of how the patient’s age, health status, and specific type of SCID influence treatment outcomes. Families often closely monitor treatment options and clinical trials, carefully evaluating reported outcomes
Deciding whether to participate in a clinical trial can be a challenging decision. The answer is not one-size-fits-all. Each clinical trial has benefits and risks. Before you decide to be in one, you need to have all your questions answered. Below are some questions to consider:
- Why do I want to take part in a clinical trial?
- What are my goals and what do I expect if I decide to take part? How realistic are these?
- Do I have all the information I need to make an informed decision?
- Do I feel that my doctors are confident in the predicted outcome if I decide to take part (or not take part) in this clinical trial?
- Have I weighed the benefits against the risks?
- Have I thought about other factors, such as travel, time, and money?
- Have I looked at all my other options?
Some of these questions may not have clear answers, but they can help you start thinking about these important issues. Each person’s situation is unique, and their reasons for wanting or not wanting to participate in a trial may vary.
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