Get Involved
Help us advance neuromuscular research and make an impact.
Clinical research helps us learn more about neuromuscular diseases that can lead to improved diagnoses, care and educational resources. But we can't do it alone. We need your help. By participating in one of our many clinical trials, you can help us continue to move research forward.
Frequently Asked Questions
Yes. Each study has particular inclusion and exclusion criteria. Please see our Currently Enrolling Studies page for the particulars for each study.
No, there is no charge to study participants to participate in a research study. Insurance will neither be notified of your participation nor billed for our services. Insurance will be billed for standard of care services that you would normally get as part of your standard clinical care.
Absolutely! All participation in research is voluntary and you can withdraw at any time with no repercussion.
Some studies do pay participants, but not all studies pay. The study coordinator will let you know at the time of your enrollment if there is payment to participants.
It depends. Some studies are purely observational and some have a treatment of some type. You can only be enrolled in one treatment study at a time. However, depending on the study, you may be able to participate in an observational study and a treatment study at the same time.
The KU NMRD Neuromuscular and ALS Clinics are pay for service medical clinics in which your insurance may be billed for the services or you may pay out of pocket. The KU NMRD Research Office is a research facility and does not charge for the visits and does not notify your insurance of the visits.
The data we collect is not a medical record but is a research record only. Therefore, we do not disclose the data with your PCP.
No, definitely not. The data we collect is only for research and is not considered medical records.
It depends. The KU NMRD will enter some of the information into internal and external databases. Each study you participate in will have guidelines about what is done with the data. Before you become part of a study, you will be informed of how your information will be handled.
When we share the data we collect we remove all identifying characteristics from the data so that no one will know you were the person from which the data was collected.
You can also visit the NIH website to learn more about the basics of participating in clinical trials and the impact of NIH research.
Join us
Are you ready to get involved? Visit our Currently Enrolling Studies page to learn more about available opportunities and ways you can help us advance neuromuscular research.
