Participating in Research | Overview
Cost and Time Commitment
Participation in all studies are free of charge. Travel to Boston is not required and individuals from anywhere in the world may participate. The telephone interview, blood or saliva sample, and paperwork should take no more than 2 hours to complete.
The research we are conducting consists of studies of indefinite duration. Therefore, it is impossible for us to predict when, if ever, we may have results. Often, research studies take years to complete. Participants and/or their physicians are welcome to contact us at anytime for an update on our research.
Reporting of Results
Because our laboratory is a research laboratory, we cannot release individual results directly to patients. Your participation is unlikely to result in any direct benefit to you, but it is likely to benefit scientific research and patients in the future who are affected with muscular dystrophy and other neuromuscular disorders. However, if in looking at the specimens that you provided us with, we do find information that may be of clinical importance to you and your family, we would offer to make this information available to your physician, who could then refer you to a clinical laboratory. A clinical lab would have the ability to duplicate and verify our research, and then provide your physician with the information. There is likely to be a charge for the services a clinical lab performs, which is most likely covered by your insurance carrier.
If you have any questions or would like to enroll in this study, please contact us.
Step for participation are outlined under How to enroll a patient.