A collaborative Alzheimer disease research exchange using a community-based Helpline as a recruitment tool

Although barriers to research participation present challenges for researchers trying to recruit participants, community-based organizations typically have a relationship with and access to potential participants, but often lack information about local studies recruiting participants and/or specifics about studies, how to describe them and how to refer their clients to a study. Therefore, a Community-Based Participatory Research (CBPR)model of collaboration may be a mutually advantageous option for recruiting participants to Alzheimer disease research. The broad goal of this study was to assess whether this void could be bridged and relationships developed between the Alzheimer's Association of Greater Indiana and researchers at the Indiana Alzheimer Disease Center, and improve flow of information to increase research participation to any or all of 4 projects recruiting research participants at the time. Of the 257 Helpline callers who received information about the 4 local studies recruiting participants, 4 family caregivers called the research coordinators and 2 participants were enrolled into 2 separate studies. One person was interested and had completed and returned initial paperwork but had not yet scheduled a screening visit. The National Cell Repository for Alzheimer Disease received 0 calls (participation in National Cell Repository for Alzheimer Disease was 1 of the 4 projects offered to potential participants). Active CBPR is a good goal to strive toward. Community partners are critical to gain access to potential participants for our research. Despite the low number of recruits to Indiana Alzheimer Disease Center studies, this CBPR project was considered a success. Distributing information about local studies to family members and persons with dementia using the Alzheimer's Association of Greater Indiana Helpline was seen as important by the family members in this study. The Helpline may prove to be an excellent mechanism to do this once revisions are made to improve the efficiency of the methodology and address several limitations of this study. In particular, the Institutional Review Board had approved only the patient/family caregiver call the clinical trial coordinators. We believe if the clinical trial coordinator could call the caregivers with information about studies and projects, recruitment, and retention through the Helpline would be more successful.