Identify blogs and social media sites with existing large memberships of Alzheimer's caregivers. Sites with opt in email lists are likely to be the most effective. Partner with them for specific trials and have them share information with readers; or, use links to a specific clinical trial pre-screener.
Optimizing Clinical Studies Recruitment
How can we optimize participation in Alzheimer's clinical trials and studies?
The national goal of effectively treating or preventing Alzheimer’s depends on us all -- potential participants and study partners, caregivers, healthcare providers, researchers, agencies and organizations, advocates, pharmaceutical companies, the media, and more. The scientific opportunity to build on what we have learned through research has never been greater. Capitalizing on these opportunities depends on participation and partnership of everyone who is willing and able to volunteer for research and on the support of those volunteers. Only by working together can we succeed in finding ways—and finding them more quickly—to effectively treat and prevent Alzheimer’s and related dementias.
How can the Alzheimer's community encourage and strengthen participation in clinical trials and studies?
Urban and rural locations can encounter the same transport challenges, long distances between home and clinical trial site, stressful traffic, challenging weather and cost of parking. Further, for many persons participating in Alzheimer's clinical trials, their caregivers are also elderly and are unable to endure the financial and physical stress of driving under stressful conditions. To address these challenges, in our ...more »
Ads or short articles in the American Medical Association Journal and website that could catch the attention of doctors who can recruit. They are the "feet on the ground" that see potential participants every day, know their history and could take a moment to tell them the importance of this work. Provide a patient with a website or a card that would be hard to miss or forget, with information about how to reach or ...more »
Studies often provide good, free healthcare to ensure that participants are healthy and that they can really see how the drug is having an effect. Make this fact more widely known.
Want more trials for a variety of levels of dementia
People like to be recognized and thanked for their participation in most anything - that is tru also for participating in research. Find ways to say thank you and recognize volunteers eg. actual thank you notes when they complete a study, once a year publish all the names of those who participated in research studies in the past year in a local newspaper, have volunteers make a quick call to say thank you and give one ...more »
Not enough attention is paid to the participant's cost in supporting the research long term: time it takes from other activities, cost of personal transportation use that can be significant, etc. At a minimum, the participant should be offered to directly learn the results of all the tests taken on him/her (this part of the idea has already been suggested by another), or at least know it will be shared with his personal ...more »
At the USF Byrd Alzheimer Institute we developed a combined program that A) increases identification of memory impairment in community residing older adults and B) establishes a registry of individual who can be approached for clinical research studies. Our staff trains retired health care professionals to administer the MoCA memory screening tool. These retired professional volunteers then administer the MoCA to older ...more »
How can we improve recruitment and retention in Alzheimer's clinical studies? I feel that involvement of community and rural hospitals would improve both recruitment and retention. The major clinical research sites are usually centered in large academic sites. I have worked in a large academic site in a large metropolitan area while at the same time working in a community hospital outside of the metro area. People do ...more »
Allow participants in a study to have access to their test results when the study is concluded.
🍀 Being a preventive geriatrician and gerontologist I feel that in the curriculum of medical schools the following concept can be instilled, 1. The legal community area which comes under the medical school should be initially defined 2. An awareness campaign should be held to attract student volunteers who are interested in the elderly support 2. The volunteer medical students should be selected and trained on basic ...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 »