We are thrilled to announce the publication of: "Make research more people-centered": Two ADNI participants share recommendations for more inclusive Alzheimer’s disease research in Alzheimer's & Dementia: The Journal of the Alzheimer's Association. The publication was part of a special edition for the 20th anniversary of the Alzheimer's Disease Neuroimaging Initiative (ADNI) and was celebrated at the recent Alzheimer's Association International Conference in Philadelphia.
Insights from research participants are rarely published in scientific journals. Rochelle Long and Cynthia Huling Hummel both serve as members on the Alzheimer’s Clinical Trials Consortium Research Participant Advisory Board (see photo). They offer invaluable guidance for making Alzheimer's research more inclusive and participant-focused. Sarah Walter, a researcher at USC ATRI, co-chairs the Advisory Board and assembled their feedback. Here are their key recommendations:
Prioritize People-Centered Research
- Build relationships within diverse communities to foster trust and inclusivity.
- Act on participant feedback to enhance the research experience.
Demonstrate Participant Value Beyond Data Collection
- Regular check-ins, such as phone calls or personal notes, to show appreciation.
- Establish participant advisory boards at both local and broader levels.
Return Individual Test Results
- Share medical information including biomarkers, MRI, and PET scan findings, and cognitive test results with participants.
- Celebrate new discoveries and openly discuss setbacks to foster transparency and learning.
Engage Participants as Research Ambassadors
- Encourage participants to recruit others by demonstrating the study's value to their health and well-being.
Support Screen Fails
- Appreciate the efforts of those who don't meet the criteria for enrollment and refer them to other potential research opportunities.
Thousands of individuals contributed their time and efforts to advance Alzheimer's disease research. Over the past two decades, more than 2,400 participants have engaged in the Alzheimer's Disease Neuroimaging Initiative (ADNI) across North America. Their commitment has profoundly enriched our understanding through cognitive testing, blood work, MRI, PET scans, and lumbar punctures.
This research underscores the importance of teamwork among researchers, participants, study partners, funders, and healthcare professionals worldwide. We thank all former and current members, some of whom have participated for up to two decades, of the Alzheimer's Clinical Trials Consortium (ACTC) Research Participant Advisory Board for their dedication and contributions.
If you'd like to learn more, join us for a special webinar on World Alzheimer's Day 2024 as we explore the critical importance of inclusive Alzheimer's research. Emmy Award-winning journalist Angela An will engage in a thought-provoking conversation with Sarah Walter from ATRI and ACTC about how partnering with research participants can drive more effective and equitable outcomes.