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 language | English (US) |
|---|---|
| Pages (from-to) | 147-152 |
| Number of pages | 6 |
| Journal | Intractable and Rare Diseases Research |
| Volume | 3 |
| Issue number | 4 |
| DOIs | |
| State | Published - 2014 |
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Keywords
- ASD
- autism
- clinical trials
- Fragile X syndrome
- health disparities
- under represent minorities
- URM
ASJC Scopus subject areas
- Medicine(all)
Cite this
Participation of underrepresented minority children in clinical trials for Fragile X syndrome and other neurodevelopmental disorders. / Tasleem, Chechi; Salpi, Siyahian; Lucy, Thairu; Hagerman, Randi J; Reymundo, Lozano.
In: Intractable and Rare Diseases Research, Vol. 3, No. 4, 2014, p. 147-152.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - Participation of underrepresented minority children in clinical trials for Fragile X syndrome and other neurodevelopmental disorders
AU - Tasleem, Chechi
AU - Salpi, Siyahian
AU - Lucy, Thairu
AU - Hagerman, Randi J
AU - Reymundo, Lozano
PY - 2014
Y1 - 2014
N2 - 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.
AB - 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.
KW - ASD
KW - autism
KW - clinical trials
KW - Fragile X syndrome
KW - health disparities
KW - under represent minorities
KW - URM
UR - http://www.scopus.com/inward/record.url?scp=85010160380&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85010160380&partnerID=8YFLogxK
U2 - 10.5582/irdr.2014.01025
DO - 10.5582/irdr.2014.01025
M3 - Article
AN - SCOPUS:85010160380
VL - 3
SP - 147
EP - 152
JO - Intractable and Rare Diseases Research
JF - Intractable and Rare Diseases Research
SN - 2186-3644
IS - 4
ER -