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 »
The testing that is available presently is for identify mild, moderate, or advanced ALZ. There have recently been limited research to see if the sooner a person is identified and treatment begins the slower the disease progresses.
Need research to develop tests to identify earlier symptoms of the disease.
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 »
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 »
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 »
In urban areas where diverse non-English speakers are more plentiful, enlist the help of caregivers with such skills to better explain and enroll potential study subjects. The caregiver perspective is unique and can best anticipate and explain the questions that prospective subjects and their caregivers have. Combined with their non-English language skills, the study has a better chance of enrolling more diverse subjects. ...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 »
Explore the feasibility of placing amyloid PET scanners in optimal locations and returning results to local sites so investigators can pre-identify suitable candidates. Such an approach might also be applied to screenings and studies which require lumbar punctures. Devote resources to identifying people at risk earlier in the disease process (e.g., genetic, biomarker, clinical, demographic).
Consider collaborating with existing registry programs or creating local registries to find potential volunteers. Incorporate trial-ready cohort programs, such as TRC-PAD and EPAD, into the screening model as a method of high-efficiency enrollment.
Run multiple, complementary studies at a site so that screening efforts are not specific to one trial and can offer more than one research participation option for many volunteers, such as those at varying stages of disease.
Establish a community screening center or offer a financial incentive to sites that can pre-screen for studies beyond their own investigations. Additional required informed consents should apply to all disease stages and trial interventions; locate such sites near principal investigator sites.