Study title: Brain Research Interest Registry Study number: IRB-AAAQ9658
Participation duration: Indefinite Anticipated number of participants at this site: 2000
Principal Investigator: Karen L Bell, MD Phone Number: 212-305-9194
Study Coordinator: Katrina Cuasay, MA Phone Number: 212-305-2077
What is this survey/registry about?
We are asking you to take part in a research interest survey because we are starting a registry of persons who might be interested in participating in various research studies on Memory Disorders, the Aging Brain, and Alzheimer’s Disease. By completing this survey, you are joining the registry and agreeing to allow us to keep your information in order to contact you regarding research you may be interested in.
What will I be asked to do if I choose to complete this survey?
We will contact you by your preferred method of contact when new studies or opportunities to participate in research arise. This registry does not have an end date when it will expire.
Are there any risks to participating in the survey and joining the registry?
There are no physical risks related to participating in this survey.
Are there any benefits to participating in the survey and joining the registry?
There are no direct benefits to taking part in this survey. By joining the registry, you will be contacted about with information about the types of studies that you have expressed interest in.
What will happen to my contact information?
Every effort will be made to keep your personal information confidential. A hard copy of the completed survey will be stored in secured folders in a locked facility. The information will be submitted to the Columbia University Alzheimer’s Disease Research Center (ADRC) Data Core and entered into a secure database. All documents will be kept in strict confidence by the investigator in compliance with federal regulations and guidelines. All digital information will be kept on secured, password-protected, and encrypted server, desktop, or briefly on encrypted temporary device. The investigator, Columbia University Alzheimer’s Disease Research Center staff and other professionals who may be utilizing the registry, and the Institutional Review Board will be able to look at, copy, use and share your information.
Your authorization to use and share your information does not have an ending date. You may change your mind and withdraw this consent and authorization at any time and for any reason by contacting the Study Coordinator at 212-305-2077.
Will I get paid or have to pay to take part in this survey/registry?
You will not receive any payment for taking part in this survey. There will be no costs to you for being in this survey.
What are my rights if I take part in this survey/registry?
Taking part in this survey/registry is your choice. You can decide not to take part in or stop being in the registry at any time. Please contact the study team if you decide to leave the registry.
Who can I call if I have questions?
You may call the study coordinator at 212-305-2077 if you have any questions or concerns about this survey and potential research participant registry. If you have any questions about your rights as a participant, or if you have a concern about this survey and registry, you may contact the Institutional Review Board listed below:
Institutional Review Board, (212) 305-5883, firstname.lastname@example.org
Columbia University Medical Center
154 Haven Avenue, 1st Floor
New York, NY 10032
Please confirm your interest in participating in a memory disorders research study.