Frequently Asked Questions

What are you looking for in a potential study participant?

We exclude people with Parkinson's Disease, stroke, clinically significant depressive symptoms, abnormalities in B12, Rapid Plasma Reagin (RPR), or thyroid function that may account for the cognitive symptoms, significant visual or auditory impairment, and systemic illness that may impair completion of the Registry evaluations. Every study participant must have an informant or caregiver known as a study partner who knows the person well and can answer questions about the participant's memory and abilities for daily living.

Is there a minimum and maximum age limit?

We are looking for people 60 years and older without memory problems and people of any age with memory problems.

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.

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 ADC Memory Care Clinic and the Research Office?

The Memory Care Clinic is a pay for service medical clinic in which your insurance may be billed for the services or you may pay out of pocket. The Research Office  is a research facility and does not charge for the visits and does not notify your insurance of the visits.

If I am participating in a study, am I then considered a "patient" of the clinician I see at the KU ADC?

No. You are considered a research study subject or participant. Only if you see a clinican in the Memory Care Clinic, are you considered a patient of that clinician.

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 ADC?

 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 ADC do with the data that is collected from study participants?

It depends. The KU ADC will enter some of the information into internal databases only and some data will be entered into a National ADC database. 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 is handled.

Last modified: Jun 15, 2016