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 »
A dedicated databank should be created for those interested in Alzheimers trials. If the program could incorporate data mining, where information entered by the neurologist could instantly exclude people from certain trials but include them for others. If the program could, instantly, populate a list of possible trials in which patients met inclusion criteria, then patients and their families could research which of... more »
Create and maintain a database of Alzheimer's patients and their family members. This will enable researchers to not only contact family with important research results but also to have the ability to follow this disease on a massive scale. Then maybe scientists and researchers will have a better opportunity to find trial participants with documented genetic links to this disease.
The VA provides 1741 domestic medical facilities with some degree of mental health and/or primary care provided to veterans and qualifying family members. Eight conditions are targeted in Mental Health, but not Alzheimer's. However, screening for dementia is offered, so could be a tapped as a source of recruitment for research. A cursory review of the attached report appears to include any efforts aimed at a large population... more »
Offer study participants free education and counseling on how to avoid getting Alzheimer’s as a reward for taking part. Coach them on making life-style changes that will help them avoid dementia.
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 »
Bring together the leadership of registries to assess and devise a plan to link registries for the benefit of all. In addition to optimizing infrastructure and collaboration, examine how national outreach could support increased registry-based recruitment to trials.
Identify measures of success for a registry and compare the effectiveness of registry models (e.g., national vs. regional or local; Alzheimer’s and dementia vs. “brain health;” on-line vs. in-person; primary care vs. community vs. memory care based, etc.).
Examine the motivators, barriers, and facilitators to enrolling and remaining in a registry until invited to be considered for a study. Identify methods that influence a registry enrollee to participate in a study, including an analysis of how participants’ cognitive and functional status, demographics and other variables influence their registry behavior.