Participation of underrepresented minority children in clinical trials for Fragile X syndrome and other neurodevelopmental disorders

Chechi Tasleem, Siyahian Salpi, Thairu Lucy, Randi J Hagerman, Lozano Reymundo

Research output: Contribution to journalArticle

Abstract

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.

Original languageEnglish (US)
Pages (from-to)147-152
Number of pages6
JournalIntractable and Rare Diseases Research
Volume3
Issue number4
DOIs
StatePublished - 2014

Keywords

  • ASD
  • autism
  • clinical trials
  • Fragile X syndrome
  • health disparities
  • under represent minorities
  • URM

ASJC Scopus subject areas

  • Medicine(all)

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