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?
The folks that attend events at Senior Citizens Centers or that live in Senior living arrangements are, by definition, seniors and naturally have an active interest n matters related to their health.
Search governmental death records to identify Alzheimer's or dementia, etc., as cause and then attempt to follow up with family members, (siblings, off spring, etc.,) to identify illness patterns.
I know that it can often be difficult for caregivers to get potential study participants in for their study visits. There are a variety of reasons for this, but one of the most common is that the research centers and clinics where studies are being conducted are in inconvenient locations or difficult to get to. I think that study recruitment and participation would be greatly improved if the testing centers were taken ...more »
I’ve signed up for several sites that match researchers to willing participants, and I mark the type of trial I am interested in. But they contact me about a variety of trials that don’t apply to me instead. Sometimes a trial seems to apply to me, but after applying to be in the trial and submitting all kinds of information, I find a list of requirements that I don’t match. Why not make it clear before the person applies? ...more »
A public service commercial that is factual and emotional
with stats showing how common the disease is and
demonstrating how AD affects the day to day life
With a 1-800 number to obtain information on how to become a research participant
My husband and I recently volunteered for a long term Alzheimers study. We were both found to be not eligible due to current medications we take. We each take 1 med which is not related to Alzheimers or dementia. We are in our late 60's. most people our age are on some type of medication. I think it would enrich the study to be able to include patients who are currently taking medications that are commonly taken ...more »
A few years ago, my physician and I filled out a fairly long application for a NIH Alzheimer’s Drug trial. Amazingly, I received no feedback from NIH, neither yay or nay. I am concerned that other willing candidates like me will not submit for another trial without some feedback. I suggest a communication system between Alzheimer trials to 1. Ensure feedback to submitters, 2. Share submissions with other trials to ensure ...more »
Many insurance companies will not pay for any medical issues for someone who participated in one or more clinical trials. Right now the insurance company can deny coverage for a health issue they say may be due to participation in clinical trials. This should not be allowed. No one who is brave enough to participate in a clinical trial should have to pay for medical care that would have been covered had they not participated ...more »
Clinical trial data is widely considered "safe" data and individuals who join a trial may want their identity protected. However, for trials administered through individual doctor's offices or small clinics, the identity of people may be held in office computers. I suggest that a highly secure IT solution for protecting identity at this level be sought.
Physicians of all kinds need to be more informed of clinical trials. As a caregiver for a spouse with cancer, never once was a clinical trial mentioned in her diagnosis or treatment processes. Only when I sought information on my own did I find that we could have participated in lifestyle or survey trials, but we I found them too late. Information about clinical trials and the importance needs to be provide while new ...more »
National Alliance for the Mentally Ill (NAMI) has chapters in cities, towns, and counties around the country. They offer a lot of support groups that meet regularly. If our extended family is any indication, having members with Alzheimer's and others with mental illness is not uncommon. Seems like a natural potential partnership opportunity. Lifelong Learning Institutes exist under the auspices of universities around ...more »
Please include those in the age range, with family history, to participate in the study. I believe that genetic history could give you a percentage chance of developing Alzheimers. Add to this patient history of preventative care (statins, BP and diuretic meds, vitamins and natural supplements). Testing to consist of neurological evaluation and indicative blood tests. If it is determined early on that the treatment ...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 »
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 »