Exudative Age-Related Macular Degeneration Adherence Study
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Purpose
Purpose
Exudative Age-Related Macular Degeneration (often called "Wet AMD") is a leading cause of vision loss in adults over 65. While modern treatments like eye injections can effectively preserve vision, we know that the schedule is demanding and the burden on patients is high.
Our goal is to understand the real-world challenges you face. We are looking for patients and caregivers to help us design better ways to support treatment and protect vision.
Opportunities
Opportunities
We are currently conducting a study to understand the barriers to care such as travel distance, scheduling issues, or anxiety about injections. We want to use your feedback to create a new support program that makes sticking to treatment easier. There are two compensated opportunities for which you can be eligible:
We are looking patient or caregiver representatives to join our Community Advisory Board. As a CAB member, you will not just be a participant; you will be a partner in our research. You will help guide the study, provide feedback on interview questions, and help us interpret our findings.
What is involved?
Role: Advise the research team on recruitment strategies and intervention development.
Commitment: Quarterly and ad-hoc meetings (once every 3 months).
Format: Virtual meetings (held online).
Compensation: $100 per hour.
Who are we looking for? We are looking for individuals with a diagnosis of exAMD (or their caregivers) who have experienced difficulty keeping up with treatment appointments, have access to a computer/internet, and are willing to share their perspectives.
We are hosting group discussions to hear directly from those affecting by Wet AMD. We want to know what makes treatment difficult and what would make it easier for you to attend appointments.
What is involved?
Format: A small, friendly group discussion (4–6 people) held over Zoom.
Duration: Approximately 1 hour.
Topic: You will be asked about your experiences with eye injections
Privacy: All sessions are audio-recorded for research purposes but your identity will remain confidential.
Compensation: $100 for each focus group with the potential for a $50 survey at a later date
Who is eligible?
Patients: Adults diagnosed with exAMD who are actively receiving treatment
Caregivers: Family members or friends who assist patients with exAMD.
Providers: Ophthalmologists who provide care to exAMD patients can participate in separate individual interviews
Please note we take your privacy very seriously and we have a Certificate of Confidentiality that helps us protect your data. The Certificate of Confidentiality was established by the Public Health Service act passed by Congress and cannot be overridden or bypassed by executive order. We are committed to doing research that helps improve the health of the exudative macular degeneration community while keeping your data safe.
The National Institutes of Health is funding this work. If you have questions, concerns, or complaints, you can reach out to the study principle investigator Dr. Timothy Janetos at timothy.janetos@northwestern.edu or the Northwestern University Institutional Review Board, who approved the study (email: irb@northwestern.edu; phone: 312-503-9338). Northwestern University IRB# STU00224386
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