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REHABILITATION AFTER SPINAL CORD INJURY: BECOMING A RESEARCH SUBJECT

During the course of your rehabilitation, or at a routine follow-up visit with your doctor, you may be asked to participate in a research study on some aspect of rehabilitation. How can you decide whether or not to volunteer to be a research subject? This is a highly personal decision.
One consideration is whether the research has scientific merit. Any study that is performed in a reputable research institution must be reviewed and approved by the Institutional Review Board (IRB) for human subjects’ research. This board consists of a group of physicians and other clinicians from the institution and representatives of the lay public. The IRB is charged with determining whether the proposed study has scientific credibility (in other words, is relevant and well-designed) and whether the ratio of potential risks to potential benefits is acceptable (relatively small risk to individual subjects and a relatively good chance that the drug or technology will prove beneficial for a particular condition).
All studies involving medication, surgery, or any significant risk require a written document that explains the rationale, the risks, and the expected benefits of the study to potential subjects. For an approved study, you will be asked to review and sign this document, called an Informed Consent. If you are not offered such a document, be wary about participating in the study. You may not be adequately informed or protected against potential harm. If a study has not been approved in writing by the applicable IRB, you would be unwise to participate.
Another consideration in deciding whether to participate in a study is whether it could have direct benefit for you. Some research studies must involve teaching you a new skill (for example, relaxation training) or providing a medication with the potential to alleviate pain or spasticity. Other studies may have the potential for helping others in the future, but no possibility of an immediate benefit to you as a subject. You should clearly understand the potential for direct benefit or not, and this may be an important factor in your decision to participate. Even with an IRB-approved study, it is wise to check with your own physician before volunteering.
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