What is the A-List?
We are a self-identified, online AD advocate research network of – the “worried well,” those at high familial risk, who may or may not have memory loss, a diagnosis of Alzheimer’s and other dementias, and their care partners. We are using our collective voice to overcome scientific skepticism around the value of self-reported patient and caregiver information to inform and advance research.
Why Should We Join? 10 Good Reasons:
1. If you believe insights from your own AD journey can help others
2. If you want your brain-span to match your life-span
3. If you prefer to fight AD rather than feel helpless
4. If you think we can help researchers find a cure faster
5. If you believe caregivers count and deserve to be heard
6. If you’re game to test the latest mobile technologies to help caregivers
7. If you believe in prevention and that brain health matters
8. If you want to let the medical community know how we want to be treated
9. If you believe that we can turn our collective stories into evidence-based data
10. If you want to help leave a legacy for your children
Who can join the A-List?
Anyone can join who is:
• Worried, but well – believe they are at risk for Alzheimer’s disease or dementia, and are concerned about those “senior moments,” or subjective memory loss
• Diagnosed with Mild Cognitive Impairment, or Alzheimer’s and other dementias
• A care partner* for a loved one with Alzheimer’s or other dementias
• A family member of a loved one with Alzheimer’s or another dementia, with a higher risk profile due to familial history of disease
• None of the above, but committed to helping accelerate AD research by signing up for prevention studies and being part of a well-characterized and research-ready cohort
We will ask you some questions to better understand your current situation in order to connect you with the right projects.
Who Is A *Care Partner?
A Care Partner is anyone who takes care of someone with Alzheimer’s disease or dementia. You may or may not:
• Live with that person and support their care at home
• Oversee care in a long-term care facility/ other setting
• Be the primary caregiver, but help out with the care
• Be related to the individual living with Alzheimer’s
You MUST care about making a difference in your loved one’s life and in the fight against Alzheimer’s!!
How is the A-List different than a registry?
A registry uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, that serves a predetermined scientific, clinical, or policy purpose(s).
The A-List is an online community engaged in a variety of research and clinical studies. A-List members will complement enrollment of participants across multiple registries. But we will also answer general surveys, beta-test new mobile health products, and be recruited to join IRB-approved clinical trials. Our mission is to enhance recruitment across all Alzheimer’s disease prevention, patient and caregiver studies.
Do I need to live in the United States to join the A-List?
Currently participation in the A-List is being offered to U.S. residents. As a virtual platform, we are global- ready, but for your protection, we are first undertaking a process to fully understand country level regulations regarding data sharing and privacy. Stay tuned.
Where do I join the A-List?
Click on this link to add your name and email, and join the A-List.
How much time will it take to be a member of the A-List?
We respect your time. You can expect to hear from us twice monthly with short surveys about your priorities and what matters most, and opportunities to learn about research. You have the option to participate or not participate in any of the opportunities that are offered – there is no obligation.
Is the A-List a research tool?
The primary purpose of the A-List is to match researchers from academic institutions, pharmaceutical companies, and technology companies with interested patients diagnosed with Alzheimer’s disease and other dementias, or MCI, adults at risk for Alzheimer’s, and care partners, who want their voices heard in the battle to defeat Alzheimer’s disease and other dementias.
Will my data be sold?
We will not sell your information.
Will my name be shared with anyone outside of the A-List?
No, your data will be de-identified and never shared with your name. We use information collected through this Site to create a compiled, aggregate view of usage patterns. We may share aggregate information with third parties so they can better understand our user base. We may also share with third parties information about how particular individuals use this Site, but only on a de-identified basis (“Individualized Data”). Individualized Data is not personally identifiable, but it does reflect the usage patterns of a particular Site user, as opposed to Site users collectively.
Are my responses and my data kept anonymous?
Who will use the feedback and opinions from the A-List?
Following are some examples:
• Universities want to study how well doctors, patients and families work together to improve Alzheimer’s disease/ dementia sufferer treatment approaches
• Advocacy groups want to better understand how to help their members
• Federal and state governments want to understand how they can financially support you and your family with grants
• Lawmakers want to understand your needs to better advocate for you as patients and caregivers
• Pharmaceutical companies want patients and caregivers to participate in clinical trials to accelerate cures
• Manufacturers of technologies want to test devices to make day-to-day living easier
We will be taking your “pulse” with short surveys to better understand your current situation, in order to connect you with the right projects.