PATIENT ENGAGEMENT IN ALZHEIMER’S AND MILD COGNITIVE IMPAIRMENT CLINICAL TRIALS

Abstract

With such a large number of individuals affected by Alzheimer's disease (AD) or Mild Cognitive Impairment (MCI), we could expect fast enrollment into clinical trials. In reality, we are facing several obstacles: 1) Patients are underdiagnosed. 2) Patients have a limited knowledge of clinical trials and some misconceptions. 3) AD/MCI clinical trials are complex, prohibiting participation. The easiest and fastest way to sensibilise and educate a large number of people is online. However, many of the individuals affected by AD/MCI do not have sophisticated digital media and computer experience. In situations where the subject has been diagnosed with AD, their children often navigate online for answers. Our biggest challenge is in recruiting participants for MCI trials, when younger family members might not be aware their parent has memory problems. Although an online presence is necessary and desired to improve overall awareness and dialogue inside families, it is insufficient alone. We diversified and adapted our engagement strategies to reach those individuals. We developed a large community outreach effort, offering services such as educational seminars, free memory testing, and genetic testing through Spartan Bioscience. Our events were advertised in the newspapers, on the radio, or through local AD community actors. The objective was to raise awareness of MCI symptoms and clinical trials as well as to give participants an opportunity to ask questions to a doctor. Different formats, focus, and services offered at those events were tested. Community events dedicated to providing education on memory loss had the most success. Patient's engagement increased when those were coupled with the opportunity to undergo a memory test or genetic testing. Out of 75 AD/MCI patients screened in clinical trials within one month, 21% originated from community events, 38% from referrals, 21% from our database, and 11% from digital media and online efforts. Community outreach should not be overlooked to engage potential MCI participants and diversification of outreach methods should be favored. Participants were especially responsive to opportunities to learn more about their specific risk, whether through a memory test, genetic testing, or clinical trials offering a work-up including brain scans.