To ease the transportation burden on patients, perhaps a carpooling system could be devised to pick people up within local communities and provide transport to sites. The social interaction and support + accountability of showing up for a pre-scheduled ride might help improve engagement, retention, and interest in signing up for a study. Additionally, this might reduce the burden on the caregiver to take care of errands/housework ...more »
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?
For people curious about what a trial is like, something offering peer reviews of the experience would be great. It could enable: - Easy ways for participants to provide feedback on their experience and how it could be enhanced - Forums for participants to speak to each other and share tips and tricks about how to navigate difficulties (e.g., navigating logistics of getting to the site) - Transparent reviews of the trial ...more »
Require that all known medical solutions to devastating diseases be released to the public. It is my belief, and is the thinking of some of the ethical scientists in the field of medicine, that drug manufacturers are holding solutions off the market so that their profits continue to accrue unabated. If we have a cure, how can the chain of greed continue to benefit all those currently benefiting by the sale of drugs ...more »
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.
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 »