Mesulam Center Registry Survey
In order to participate in research at the Mesulam Center, we ask that you join our registry. Your participation in the registry helps us determine your eligibility for currently enrolling studies. Please read the following information carefully. Make sure that you understand it to your complete satisfaction before agreeing to participate.
Why are you being asked to join this registry?
We are asking you to join our registry because you are interested in participating in research at our Center. Because many of our studies have strict eligibility criteria and involve specific research activities, your participation in this registry will help us determine your eligibility for our research. Joining the registry does not guarantee your participation in research at our Center.
What should I know about this registry?
Participating in this registry is completely voluntary. If you choose not to participate, we will be unable to determine your eligibility for our research. You can agree to participate and change your mind later.
Who can I talk to?
If you have questions, concerns, or complaints, please contact our center at 312-926-1851 or firstname.lastname@example.org.
This research has been reviewed and approved by an Institutional Review Board ("IRB"). You may talk to them at (312) 503-9338 or email@example.com if:
Your questions, concerns, or complaints are not being answered by the research team.
You cannot reach the research team.
You want to talk to someone besides the research team.
You have questions about your rights as a research participant.
You want to get information or provide input about this research.
What happens if I say, "Yes, I want to be in this registry"?
If you agree to participate, you will be asked to complete an online survey. In the survey, you will be asked questions about contact information, basic demographic information, medical history, and specific interests related to research activities. The survey will take approximately 10 minutes to complete. After you complete the survey, our staff will review your responses to see if you are eligible for any currently enrolling study or studies. If we determine that you are eligible, a staff member will contact you to discuss the study for which you are eligible. You can choose not to participate in a study for which you are eligible. If you complete the survey and are not contacted by a staff member, it is because we currently do not have any enrolling studies for which you are eligible. We will keep your information on file and will contact you in the future for any studies for which you are eligible.
What happens if I do not want to be in this registry?
You can decide not to participate in this registry and it will not be held against you. If you do not participate in this registry, we will be unable to determine your eligibility for our research.
What happens if I say "Yes", but I change my mind later?
You can leave the registry at any time and it will not be held against you. To do so, please contact our Center at (312) 926-1851 or firstname.lastname@example.org.
Is there any way being in this registry could be bad for me?
There is a risk of breach of confidentiality, but measures are in place to help protect against this risk. Efforts will be made to limit the use and disclosure of your personal information to people who have a need to review this information. We cannot promise complete secrecy. Organizations that may inspect and copy your information include the IRB and other representatives of this institution.
What happens to the information collected for the registry?
The survey is being hosted by Northwestern University and involves a secure connection. All information will be kept on a password-protected computer only accessible by the approved staff members.
What else do I need to know?
You can begin the online survey and return to it at a later time. You will need to obtain a return code to reenter the online survey. In order to retrieve your return code, please call 312-926-1851 or email email@example.com.
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