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Everything you need to know as a Memory and Aging Study Participant
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Participant & Staff Partnership Guidelines
Thank you for taking part in Alzheimer’s disease research. Your participation helps advance understanding of memory and aging and supports future individuals and families affected by these conditions.
A Shared Partnership
We view this study as a partnership between:
- Participants
- Project partners (family or support persons, if applicable)
- Research staff
These guidelines help ensure a respectful, safe, and positive experience for everyone involved.
Our Shared Commitment
Together, we commit to:
- Treating one another with dignity and respect
- Creating a supportive and understanding environment
- Recognizing that memory or thinking changes may affect communication
- Working collaboratively over time as part of a long-term study
What Participants Can Expect
What you can Expect from Study Staff
Study staff will:
- Treat you with kindness, respect, and sensitivity
- Communicate clearly and adapt as needed
- Be patient and supportive
- Protect your privacy and confidentiality
- Explain all procedures and answer your questions
- Provide a safe, calm, and welcoming environment
What We Ask of Participants & Project Partners
- Communications
- Share information about health, memory, and daily funtioning
- Inform us about any changes
- Ask questions when something is unclear
- Respectful Interactions
- Treat staff and others with courtesy and respect
- Understand staff must follow research protocols
- Help support positive communication (project partners)
- Participation
- Make a good-faith effort to attend visits
- Notify us if you need to reschedule
- Participate in study activities as you are able
- Supporting a Safe Environment
- Follow staff guidance during visits
- Let staff know if you need a break
- Help maintain a calm and respectful setting
Concerns
If You Have Concerns
We understand participation may sometimes feel tiring or overwhelming.
Please let us know if:
- You feel uncomfortable or stressed
- You have concerns about procedures or interactions
- You need accommodations
We are committed to listening and responding with understanding and flexibility.
Important Information
- Participation is voluntary. You may withdraw at any time.
- Research is different from medical care and follows strict protocols
- We will try to accommodate needs whenever possible
- Project partners may assist with communication and decision-making
- Participants must follow these guidelines to remain in the study
We deeply value your time and trust.
Your participation helps advance Alzheimer’s disease research and supports future generations.
Study Procedures & Additional Opportunities
As part of the Memory & Aging Study, you may have the opportunity to participate in additional procedures or learn more about your results. Explore the resources below to understand these options.
🧠 PET Scan Information
Learn how PET scans are used in this study to better understand brain function and detect proteins associated with Alzheimer’s disease.
- What a PET scan is and who receives one
- What to expect during the procedure
- Why there may be a wait for scheduling
📊 Research Results (Biomarkers)
You may choose to receive certain research results from your participation.
- What research results mean (and their limitations)
- What is included in your results meeting
- How to interpret biomarker information
🧬 Autopsy Brain Donation Program
Participants may choose to support Alzheimer’s research through brain donation.
- Helps researchers better understand memory and aging
- Provides valuable insights for future treatments and prevention
- Completely voluntary and can be discussed with the study team
Questions? Contact your study team—we’re happy to help you decide what’s right for you.
