Caregiving can be a difficult change in the lives of those who care for loved ones. Transitions is a concept that would aid dementia/Alzheimer's caregivers, and any other caregivers with family members facing a debilitating health diagnosis, in their journey by providing an inclusive space to find tools, resources and information. An individualized plan would be created for each caregiver based on their current needs. ...more »
Advertise studies and recruit by visiting adult day care centers where many alzheimer patients are while their caregivers are at work. Provide study descriptions to staff to be disseminated to patients' caregivers. Same could be done via home care agencies
Currently, Clinicaltrials.gov is the database featuring all clinical trials. Unfortunately, it is written in clinical-speak, making it hard to locate and detemine what clinical trials are available for participation. I suggest a simple app be created that combs the Clinicaltrials.gov database for recruiting trials based on the stage of Alzheimer's disease. This would expedite the search and allow patients and caregivers ...more »
To motivate participation in clinical research, let's engage the public to become educated and informed partners with a tangible stake in the search for a cure. Taking a page from the fight against Polio, when millions of ordinary Americans became partners in the search for a cure, by mailing in their 'dimes' to fund research, our startup InvestAcure, www.investacure.com, is building an investment platform to enable those ...more »
With each successful clinical study recruitment effort, the lessons learned should be added to a national list of best practices. The same goes for unsuccessful recruitment efforts in discovering what did not work and why. These best practices must be shared online in a way that is easily searchable (e.g. recruitment promotion, study materials, phone screening, etc.) so that study teams can create their plan using the ...more »
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 »
I was a registered participant in a clinical trial here in Hawaii and submitted two cheek swabs but never received any information from the research group regarding the results . I called and left 5 messages but received no reply. This started in around October 2017.
There should be a better follow up and communication between the participants and researchers for studies are to be effective.
Just as news articles include social media sharing buttons (Twitter, Facebook, etc.), so too should studies listed in ClinicalTrials.gov and elsewhere on government-funded studies that are listed online. Each viewer should have the ability to share information about a study with one click into their social network.
Make all the test results administered for the trial available to the trial participant and their spouse/guardian. My husband recently underwent a 1-1/2 yr. trial at a university and they did the APO studies, spinal taps, MRI/PET scans, etc. which are very expensive tests, etc. but trial regs wouldn't allow them to divulge the results. For those who want them and are willing to sign accordingly to relieve the institution ...more »
Survey past and ongoing clinical trials. what has gone wrong? and how to avoid it? Create an open forum for discussion of their failures and potential solutions for future recruitment efforts. Define variables to assess how effective recruitment strategies are.
I notice how often patients are turned off by the possibility of placebo
treatment. I understand why placebo arms are needed but if similar
studies (e.g. secretase inhibitors, etc.) could pool their placebo data,
we would be able to offer a higher percentage of patients active
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 »