What are the benefits of participating in this research?
Our research could lead to new information about neuromuscular disease and the genes involved. This information may lead to better diagnostic tests, treatments and therapies. We may also be able to find the genetic cause of the neuromuscular disorder in your family.

What are the general risks of participating in this research?

The risks of participating in this research study can be summarized in five categories:

1. Risks associated with blood drawing. You may experience minor discomfort, bruising, and rarely dizziness and/or fainting as a result of having blood drawn. When possible, we will draw blood at the time of a medically indicated procedure so that you will not need to have blood drawn only for research purposes.

2. Risks associated with the biopsy procedure. The medical risks and discomfort will be not significantly greater than those already associated with the surgical procedure that has been, or will be, performed. Removal of any additional material for research purposes will only be performed if your surgeon believes that doing so would represent no or minimal additional risk beyond that associated with the clinical procedure being done. There is a risk that insufficient material for study may be obtained, in which case the research will not be carried out.

3. Risks associated with gathering medical history. Some of the information regarding your family or medical history may be uncomfortable to discuss. If this occurs, these questions may be stopped at your request. You should be aware that we may detect instances of non-paternity or adoption. If you wish, you may let us know in confidence if this is a possibility, since it may otherwise interfere with our analysis. In all cases, this information will be kept in the strictest confidence and will not be divulged to anyone.

4. Risks associated with genetic testing. There is a chance that participation in this study could cause emotional distress. Some people involved in genetic studies have felt anxious about the possibility of carrying an altered gene that places them at risk or that may be passed on to their children. If these feelings arise at any time during the study, you may contact us and we will arrange for you to speak with a genetic counselor.
There may also be social or economic risks associated with the gathering of genetic information. Our testing may find that you carry an altered gene that puts you or your children at risk for developing a muscle disorder. It is uncertain whether this information could affect your ability to be employed or insured. However, individually identifiable results from this research study will not be available to non-study personnel and will not be placed in your medical record without your consent. It is therefore unlikely that an insurance company or employer would ever learn of such results.

5. Risks associated with participation in medical research. Unfortunately, it is possible that no findings will result from this research effort. Any significant findings that do result may take months or years to complete. If you wish to inquire into the progress of our research, you are welcome to do so at any time. For more details about the risks of participating in this study, please contact us.