Barriers to research participation: Study Partner Availability Limitations Study (PALS)
Study partners are essential to assuring the scientific validity and social value of preclinical AD research. The participant-study partner pairing is known as a “dyad.” Study partners report on participants’ cognitive status, which serves two important purposes. First, before enrollment, study partners assist investigators in establishing that participants are eligible to enroll. Second, post-enrollment, study partners provide information to evaluate the experimental intervention’s efficacy. Although it is conceivable to design AD trials that don’t require dyads, there would be significant limitations of such trials. To successfully engage broad segments of the American public in preclinical AD research, we must understand and address the disparate effects of the study partner requirement on trial participation and representativeness. P3MB is collecting data to understand barriers to the identification and engagement of study partners in research and to identify promising means of reducing these barriers.
Emily A. Largent, Jason Karlawish, Joshua D. Grill, Study Partners: Essential Collaborators in Discovering Treatments for Alzheimer’s Disease, Alzheimer’s Research and Therapy, doi: 10.1186/s13195-018-0425-4 (2018).