Poster 1: Survey of Clinical Trial Interest and Literacy in Huntington Support Groups: Northwest Pilot Project

Background There has been no systematic measure of level of awareness, interest, preferences, or knowledge base regarding clinical research among Huntington families. Objective To determine the extent of clinical trial interest and literacy, and to assess response following clinical research education within a cohort of Huntington support group members in the Pacific Northwest. Methods Surveys were administered to members of six Huntington support groups before and after a clinical research educational session. Survey questions assessed levels of awareness, interest, clinical trial literacy, and factors influencing participation. All responses were anonymous. Results Ninety-nine support group members, including an HD group consisting of symptomatic, gene-positive premanifest, and gene untested (49) and caretakers (50), participated in the survey. Desire for more information was high (80%), as was interest in clinical trial participation (75%), which increased after education (85%). The greatest concerns included drug safety (50%) and time missed from work (30%). Incentives that would increase participation included assistance from a knowledgeable patient advocate (65%), reimbursement travel expenses (45%), and Saturday assessments (40%). Clinical trial literacy was very low in all parameters tested; however, significant learning occurred in concepts relating to criteria, placebo, blinding, patient rights, and consent procedures, but not in understanding of trial phases and medical care during clinical trials. Though not originally planned as a goal in this project, 7 support group participants were recruited for TRACK-HD. Conclusions Similar to survey results in other disease populations, there is low awareness and high interest in clinical trial participation among this Huntington's cohort. Drug safety was the most frequent concern. Assistance from a patient advocate was the most highly rated incentive to increase participation. Though clinical trial literacy is low, it improved significantly after a single educational session. Education in support groups is a mechanism that can increase clinical trial participation.