To help reduce stigma/concern about enrollment, current clinical trial participants could opt-in to being a peer buddy to a potential participant/caregiver who is thinking about enrolling. They could answer questions/concerns, and if they end up joining the trial they can be an ongoing source of support to stay engaged.
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?
I would participate in studies if closer to where I live, more accessible. I also am unwilling to take experimental drugs.
The more diverse your team is the better chance you have to attract diverse participants into clinical studies. Start recruiting more diverse staff that can help recruiting diverse participants.
Exploit the potential data from subjects who are already in the informed consent process, no matter what disease, for possible "serendipitous" effects of treatments on cognition and function. Over the last five years or so, FDA has approved >50 new agents or indications in cancer treatments. Many cancer studies have Quality of Life assessments built into their followup protocols. FDA, perhaps with foundational funding ...more »
It might be important to convey the right individuals in the US have to be represented in studies, especially those funded by tax payer money. If we contribute wih our taxes to the funding of AD research, we might as well participate so that findings apply to us too. This is especially important for minority groups.
Guess this isn't new. Many of us are seniors, no longer able to drive. Personally, I would likely need to take public transportation to most appointments. When you enter into communication with one of us, include a means to contact you with questions, including questions about transportation and time/day for appointments.
If possible, coventure with the Harvard Nurses Study...nurses are always gung-ho to take part in studies and trials.
Play to the uninsured and-under insured for "free" lab studies, EKG, etc.
Each chapter should have at least one research participant that has not had alz in their family. Use as a poster person and they should lead discussions regarding becoming participant even though they are not prone to get alz. They should explain the important of being in a trial, ie, needing people on both sides of the scale. The posters should be hung in pharmacies and Doctors' offices. The participant should send a ...more »
YOUR BIGGEST HURDLE: US society has been conditioned to primarily want a pill to solve any of their medical/physical problems. Their second choice, a far distant second is to require some sort of physical activity/involvement to solve the problem. The examples are everywhere; obesity, high cholesterol, heart disease, diabetes, even baldness. YOUR SECOND BIGGEST HURDLE is linked to the first: you are pitching clinical ...more »
Permit African American Referring Physicians to use the diagnosis " ALZHEIMER'S DEMENTIA " when soliciting African American Subjects/ Caregivers because this terminology carries less stigma & is more acceptable than " Alzheimer's DISEASE ".
Please consider expanding your inclusion beyond just those over 65. There are many of us who are children or grandchildren of those with dementia and Alzheimer's who are already beginning to see symptoms ourselves. We feel being left out of the research equation now only limits our options once we get older. Researchers have long suspected these diseases begin long before debilitating symptoms occur - let us tell you ...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 »
Many people with Alzheimers and Posterior Cortical Atrophy and related diseases remain independent for years. Many studies are focused on early diagnosis and potential interventions. For these people relaxing the number of visits that require the presence of study partner would help. For the required partner participation, as long as participant can participate independently, partner participation could be done remotely....I.e. ...more »
Involve high school students who have volunteer hours to perform. A student can be paired with a study participant, to accompany the participant through the trial process. Students can work on going to senior communities and senior centers and provide education about the clinical trial process and they receive "training" on the trial process, and cognitive impairment/dementia. Use high schools as trial sites.