Train and certify champions to discuss clinical trials and research within communities. Create a bureau of speakers, ideally well-suited to cultural needs of the local community, to provide community education and training for clinicians and other healthcare providers. Ensure that messaging is culturally and linguistically appropriate for targeted audience, as similar language may be interpreted radically differently ...more »
Given that there have been over 20 phase 3 disease modifying trials in the past / open currently, we should encourage sponsors to start using pooled data from their historical controls in Phase III trials so that all patients in the next generation of AD trials have access to the investigational drug. If all participants receive the drug, there would be less barriers caused by patients feeling that they may be wasting ...more »
Most studies appear to require participants to live geographically near a study site. This should allow the leveraging of local partner organizations to get the word out to their constituents via email and social media. These partner organizations could range, for example, from United Way to religious institutions (churches, mosques, temples, etc), community groups, non-profits (museums, food banks, etc.), and even small ...more »
Many people have no clue what it means to participate in a research study. As we age, we learn by doing. The best way to get buy in from the community is to walk them through the stages of actual research. A small group would be terecruited to move through the different phases of the proposed research in an open forum.
I piloted an event in which I partnered with a research entity that was recruiting. The event started with "education" over the course of an hour. People were engaged and awareness was absorbed by many in the room. Following the "educational" portion the research entity offered private screenings on site. The appointment slots were full, with many people wanting the research entity to come back the next day. While ...more »
My wife died of early onset Alzheimer's Disease. In looking at potential studies, it was clear that we would not be provided results. This was particularly distressing for the genetic studies, since I have three children who could also be afflicted with the disease, should it have a hereditary basis. I am sure that a legal document could be drafted to free investigators from liability. In this manner, subjects and ...more »
Provide monetary incentives to neurologists and specialists who refer patients to a clinical trial. If sponsors monetarily incentivize neurologists, and get the word out to community specialists near trial sites conducting AD trials, to increase trial referrals from their practice, thereby fastening recruitment.
Leverage a broad spectrum of interactive communication technologies, particularly for rural populations and individuals living alone.
The development of novel therapeutic strategies for Mild Cognitive Impairment (MCI) and Alzheimer’s Disease (AD) are major critical goals for neuroscience. Much attention has been given to the development of disease modifying pharmacological strategies targeting a-Beta and/or p-tau accumulation, but to date, all relevant clinical trials have failed. This had led to a resurgence of interest in the development of tools ...more »
A patient or want-to-be patient who has been out of healthcare, for some reason, and enters Medicare or a plan feeling or actually late may, if sensing neurological health deserves attention, be at a loss what to try to do first/early.
Just want to know if what I'm talking, doing, etc. Is really helping one into the study. I wouldn't mind staying in it if there was a possibility that it would help someone else even if it didn't help me.
My humble opinion is to make the Recruitment and Retention plan an intrinsic part of the study's methodology. It is important to perhaps run focus groups prior to developing this phase both with the potential participants, and also with their service providers. We need to take into account not only a participant's race, ethnicity, SES, culture in general, but also historical factors, and their ideas and stigmas about ...more »
My husband and I would like opportunities to share our caregiver story of how we met and continued to care for our Alzheimer's spouse while they were in memory care facilities.
Add local clinicians to site study staff to promote familiarity and community partnership.
Form a plan to reach out to religious groups. Often these groups comprise altruistic, compassionate persons who want to make a difference in their communities and world, and who want to support organizations that also have that aim. Ask to speak to interfaith groups such as local Ministerial Alliance and Church Women United meetings. Ask to speak to individual denominational meetings (although I suspect the interfaith ...more »