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 »
Too many academic institutions take forever to open trials and process patients, causing huge loss of potential patients who give up waiting or who are simply never contacted after expressing interest. Continue the trend toward opening trials at community centers where MDs have hospital access for invasive procedures to increase enthusiasm for enrollment and provide access to trials for more patients.
I've signed up for several studies and have found it off-putting that each time, I'm asked to fill out the same ream of paperwork—probably five or more double-sided sheets. When I explain that they already have all this information on me, they just say, "Sorry, each study requires its own forms." I point out that they could keep a basic set on file and give a copy to each study, which could then ask for any extra particulars,... more »
Clear communication through the best evidence-based practices of health literacy are critical to the success and sustainability of clinical trials and science in general. The vast amount of focus in the field of health literacy has been on identifying deficits of health literacy in the general population. However, increasingly the field is waking up to the reality that barriers are set by health professionals - including... more »
True commitment to engaging, recruiting and retaining members of minority or underrepresented populations in Alzheimer's research, could be demonstrated by ensuring that clinical investigators,"steering committees"and research teams are consistently representative. Strategies that have proven successful, though perhaps more labor and cost intensive, should be promoted. Building enduring relationships in minority communities... more »
My humble opinion is to make the Recruitment and Retention plan an intrinsic part of the study's methodology. It is important to perhaps run focus groups prior to developing this phase both with the potential participants, and also with their service providers. We need to take into account not only a participant's race, ethnicity, SES, culture in general, but also historical factors, and their ideas and stigmas about... 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 »
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 »
After identifying a study candidate, we must encourage POA, family members and long time friends first to allow the patient to participate and also design the study in a way that that not only encourages family and friends to participate but requires their participation to gather accurate data and possibly data from different points of view. That point of view being family members and friends that may be better suited... more »
Gather existing data on the local and targeted community, including: available CMS data on AD prevalence by county level; census data on race, ethnicity, education, religion, and geographic distributions; publicly available community health assessments. Complement data with qualitative reports to account for individuals with low health-seeking behavior.
At the site, develop a mechanism to support person(s) to lead planning, networking, implementation, and evaluation of strategies and tactics, potentially a stand-alone add-on module (to a traditional R01) that would fund an Outreach Specialist, the %FTE to be determined by the proposed scope of work. Module would require annual status report and metrics of success for renewal of NIH funds, which would emphasize successful,... more »
Develop/utilize a centralized expert ‘Navigator’ team to assist sites to adapt and implement the Alzheimer's recruitment strategies; The Navigator ‘hub’ of experts could be supported through joint funds provided by NIA, Alzheimer’s Association, ACTC, and site budgets.
Support site collaboration and communication around site-level recruitment, including the use of public-private partnerships with support from industry, to link local sites to promote this kind of effort. Fund trial or site-agnostic outreach efforts. Allow sites to use funding from a single sponsor to help support recruitment for multiple studies.
Offer community programs not targeted specifically to research recruitment (e.g., brain health/fitness, cardiovascular/diabetes risk, and memory screening). Ensure that recruitment staff connect with families and potential participants before discussing research. Ensure when feasible that a budget and plan exist to expand a site’s capacity to serve the community as a resource.