Here are some examples of potential benefits and drawbacks of participating in clinical trials:
Potential Drawbacks
Study rules may be difficult to follow and may interfere with normal daily life
There might be some barriers to participation such as lack of transportation to the study center, lack of child care during study appointments, and not being able to take time off from work to go to study visits
The treatment may not work as well in American Indians / Alaska Natives as it does in other populations or may have more side effects in Native Americans
The study rules may mean that an individuals cultural, spiritual, or emotional needs may not be addressed or respected
Example: A Native American participant needed to smudge each time before receiving treatment and she had to go outside to smudge. This often made her late for her appointments
Once a participant withdraws from a clinical trial, it is unlikely that they will be allowed back in
Example: A study participant withdraws from a study because of severe nausea at the beginning of the treatment. The nausea was only temporary, but the former participant is not allowed to re-enroll in the study
New treatments under study are not always as good or better than the standard treatment
The participant may not personally benefit from participating
Potential Benefits
Access to high quality care - participants receive at least the current standard treatment available
Participation in a clinical trial may provide the participant with free or low-cost medical care, ongoing monitoring by health care provider, and routine follow up
Clinical trials may results in a better understanding of how the treatment works in Native American patients
The study rules require that all participants be treated the same, reducing the chances that the participant will be treated unfairly
Study participants can withdraw from a study at any time for any reason (e.g., side effects)
If the new treatment works, the participant is among the first to benefit.The participant can contribute to improved cancer care for others
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