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Frequently Asked Questions

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Is there anything that would exclude me from participating in a study?

Yes. Each study has particular inclusion and exclusion criteria. Please see our Currently Enrolling Studies page for the particulars for each study.

Is there any cost involved in research? (direct cost to participant or billing of insurance)

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.

If I join a study and don't want to continue with it, can I drop out?

Absolutely! All participation in research is voluntary and you can withdraw at any time with no repercussion.

Is there any payment for the study participant?

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.

Can you be enrolled in more than one study at a time?

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.

What is the difference between being seen in the KU Neuromuscular and ALS Clinics and the KU NMRD Research Office?

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.

Do you disclose any data collected to my PCP?

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.

Do you disclose any data collected to my insurance company?

No, definitely not. The data we collect is only for research and is not considered medical records.

Is any of my personal information (ie: name, birthdate, address, etc.) disclosed to anyone other than the KU NMRD Research Office?

 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.

What does the KU NMRD do with the data that is collected from study participants?

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.

Last modified: Sep 28, 2018
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