title: Participation of underrepresented minority children in clinical trials for Fragile X syndrome and other neurodevelopmental disorders.
abstract: The purpose of this study was to identify demographic data, motivational factors and barriers for participation in clinical trials (CTs) at the University of California Davis, MIND Institute. We conducted a cross-sectional survey in 100 participants (81 females and 19 males). The participants had high education levels (only 2% had not completed high school), a mean age of 44 years (SD ± 9.899) and had at least one child with a neurodevelopmental disorder. The diagnosis of Fragile X syndrome (FXS) had a significant association with past participation in CTs (p < 0.001). A statistical significance for age of diagnosis and participation in CTs was also found (z = -2.01, p = 0.045). The motivating factors were to help find cures/treatments for neurodevelopmental disorders and to relieve symptoms related to child's diagnosis. Factors explaining lack of participation, unwillingness to participate or unsure of participation were: lack of information/knowledge about the trials, time commitment to participation (screening, appointments, assessments, laboratory tests, etc.) and low annual household income. These results show that a portion of underrepresented minorities (URM) not participating in CTs are willing to participate and suggests that reducing barriers, particularly lack of knowledge/information and time commitment to trials are needed to improve recruitment.
authors.affiliation: UC Davis MIND Institute and Department of Pediatrics, UC Davis Medical Center, Sacramento, CA, USA;
authors.forename: Tasleem
authors.initials: T
authors.lastname: Chechi
authors.affiliation: UC Davis MIND Institute and Department of Pediatrics, UC Davis Medical Center, Sacramento, CA, USA;
authors.forename: Salpi
authors.initials: S
authors.lastname: Siyahian
authors.affiliation: Touro University, Public Health Program, Vallejo, CA, USA.
authors.forename: Lucy
authors.initials: L
authors.lastname: Thairu
authors.affiliation: UC Davis MIND Institute and Department of Pediatrics, UC Davis Medical Center, Sacramento, CA, USA;
authors.forename: Randi
authors.initials: R
authors.lastname: Hagerman
authors.affiliation: UC Davis MIND Institute and Department of Pediatrics, UC Davis Medical Center, Sacramento, CA, USA;
authors.forename: Reymundo
authors.initials: R
authors.lastname: Lozano
keywords: ASD; Fragile X syndrome; URM; autism; clinical trials; health disparities; under represent minorities