ACTNOW Information and Consent

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Research Repository Consent Form

PURPOSE:
You are invited to participate in ACTNOW. If you are interested in being a part of ACTNOW, there are two ways of participating: as a Member or as a Research Volunteer.

Participating as a Member
Everyone who signs up to be part of ACTNOW becomes an ACTNOW Member. Members receive periodic newsletters with updates on Alzheimer's and dementia research news and local research opportunities. Members complete a Member Profile Survey every year to provide information about themselves, such as age and home address.

We may ask you to complete surveys about your experience as an ACTNOW member, your opinions about research or thoughts about other similar topics. These surveys may not be anonymous. You do not have to fill out the surveys. You can refuse to fill out the additional surveys and still be an ACTNOW member.

Participating as a Research Volunteer
You will indicate in the Member Profile survey if you would like to be a Research Volunteer. As a Research Volunteer, we may provide your contact information to other OHSU studies who are looking for participants.

If you indicate that you are interested to participate as a Research Volunteer, we will request you complete a Research Volunteer Referral survey every year. This survey gathers information about your personal and medical history in order to match you with appropriate ongoing or future research studies. If you are a patient at OHSU, we may collect information from your electronic medical record for this purpose. Enrollment as a Research Volunteer means that you can be paired, using information collected from the Research Referral survey, with upcoming studies as part of their recruitment processes. Being an ACTNOW Research Volunteer does not guarantee you will participate in current or future studies.

Any information regarding a specific research opportunity will be provided in a separate document. If you are eligible and decide to volunteer for a specific research opportunity, you will be given a separate consent form to sign for that specific study. If you are contacted to discuss research opportunities and you are not interested in participating, you always have the option to refuse.

By reviewing this consent form and noting that you are interested in research, you are only giving your consent to be considered for research. If you agree to this consent form but do not indicate that you are interested in participating in research, you only will be considered as an ACTNOW Member, not a Research Volunteer. Only information from your Member Profile survey will be collected and stored (see above). You will not be contacted for research opportunities.

If you want to change your status from an ACTNOW Member to a potential Research Volunteer, you may contact the ACTNOW coordinator at actnow@ohsu.edu.

Activity	Member Profile Survey	Research Volunteer Referral Survey	We May Send You Surveys to Seek Your Opinions and Ideas	You Will Be Considered for Other Research Studies
Member	Yes	No	Yes	No
Research Volunteer	Yes	Yes	Yes	Yes

WHAT WILL HAPPEN TO THE DATA?
If you choose to participate (whether as a Member or a Research Volunteer), the information that you provide will be entered into a Layton Center database. Your data will be stored on a secure database server at OHSU. Only authorized Layton Center staff and qualified OHSU researchers will have access to your data. Your data will be identifiable and will be kept indefinitely.

If you indicate that you want to be a Research Volunteer, you are agreeing that qualified OHSU researchers may use your protected health information to identify research that might be a good fit for you. You are also agreeing that we may contact you to discuss future opportunities to volunteer for new research studies.

PRIVACY & CONFIDENTIALITY PROTECTIONS:
We will not use your name or your identity for publication or publicity purposes. We will collect your contact information, date of birth, and any other information you wish to volunteer as well as information from your electronic medical record pertaining to your diagnosis and current treatments. This information will be used to assess you eligibility for upcoming studies. If you sign this form, you are agreeing that the Layton Center and qualified OHSU researchers may use your protected health information to identify specific types of projects for which you might qualify. You are also agreeing that we may contact you to offer opportunities to volunteer for new projects as they arise.

The health-related information that we gather about you for this registry is personal. The researchers are required by law to protect the privacy of information known as protected health information (PHI). All reasonable efforts will be made to protect the confidentiality of your PHI, which may be shared with others to support this research, for future research, to conduct public health reporting, and to comply with the law as required. Despite these protections, there is a possibility that information about you could be used or disclosed in a way that it will no longer be protected.

We will take steps to keep your personal information confidential, but we cannot guarantee total privacy.

RISKS AND DISCOMFORTS:
There is a risk of potential loss of confidentiality. Every effort will be made to protect your private information; however, and only qualified researchers at OHSU will be given access.

BENEFITS:
As an ACTNOW member, you will receive regular updates related to Alzheimer's and dementia research at OHSU. You may help contribute to Alzheimer's and dementia research.

COSTS:
There is no cost to you to take part in ACTNOW.

LIABILITY:
If you believe you have been injured or harmed while participating in this research and require immediate treatment, contact the PI Aimee Pierce, M.D. (503) 494-7772 or the Repository Guardian at actnow@ohsu.edu.

You have not waived your legal rights by signing this form. Any claim you make against the Oregon Health & Science University may be limited by the Oregon Tort Claims Act (ORS 30.260 through 30.300). If you have further questions on this subject, please call the OHSU Research Integrity Office at (503) 494-7887.

PARTICIPANT RIGHTS
If you have any questions regarding your rights as a research participant, you may contact the OHSU Research Integrity Office at (503) 494-7887. You have a right to refuse to sign this form. You do not have to join this or any research study. If you do join, and later change your mind, you may quit at any time. If you refuse to join or withdraw early from the study, there will be no penalty or loss of any benefits to which you are otherwise entitled. You will be given a copy of this signed form for your records.

Your submission of this electronic form by clicking on "Yes, I agree to join ACTNOW and have my information stored in the ACTNOW database" indicates that you have read the entire Information Form and that you agree to take this survey. If you change your mind, you may exit the survey at any time.

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Yes, I am at least 18 years old and have reviewed the consent form. I agree to join ACTNOW and have my information stored in the ACTNOW database.

No, I do not want to join ACTNOW and have my information stored in the ACTNOW database.

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ACTNOW is funded by the National Institute on Aging | OHSU IRB # 11606 | Principal Investigator: Dr. Aimee Pierce

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