Perceived benefits and risks of clinical trial participation as identified by workshop participants
| Benefits . | Risks . |
|---|---|
| Help future generations | Organ failure/damage |
| Feel better, alleviate pain, reduce symptoms | Death |
| Be part of the cure, work toward the cure | Pain crisis |
| Receive better health care during the study | Become sicker with medical complications |
| Compensation | Short- and long-term effects |
| Offers hope | Exploitation |
| Travel reimbursement | Need to take time off from work |
| Close monitoring of my condition | Invasive procedures |
| Gain access to new treatments, as available options for patients are currently limited | Poor communication, not being fully informed of purpose, side effects |
| Need to travel from home | |
| Receiving a placebo |
| Benefits . | Risks . |
|---|---|
| Help future generations | Organ failure/damage |
| Feel better, alleviate pain, reduce symptoms | Death |
| Be part of the cure, work toward the cure | Pain crisis |
| Receive better health care during the study | Become sicker with medical complications |
| Compensation | Short- and long-term effects |
| Offers hope | Exploitation |
| Travel reimbursement | Need to take time off from work |
| Close monitoring of my condition | Invasive procedures |
| Gain access to new treatments, as available options for patients are currently limited | Poor communication, not being fully informed of purpose, side effects |
| Need to travel from home | |
| Receiving a placebo |