Factors influencing clinical trial participation for adult and pediatric patients with cystic fibrosis

被引：6

作者：

Lee, Marissa ^{[1
]}

Hu, Xun Yang ^{[2
]}

Desai, Sameer ^{[3
]}

Kwong, Eugenie ^{[4
]}

Fu, Joey ^{[4
]}

Flores, Eri ^{[4
]}

Lazosky, Lynda ^{[4
]}

Wilcox, Pearce G. ^{[4
,5
,6
]}

Mcllwaine, Maggie ^{[7
]}

Chilvers, Mark ^{[7
]}

Yang, Connie ^{[7
]}

Rayment, Jonathan H. ^{[7
]}

Quon, Bradley S. ^{[4
,5
,6
]}

机构：

[1] Univ British Columbia, Fac Sci, Vancouver, BC V6T 1Z4, Canada

[2] Univ British Columbia, Fac Med, Vancouver, BC V6T 1Z4, Canada

[3] Univ British Columbia, Sch Populat & Publ Hlth, Vancouver, BC V6T 1Z4, Canada

[4] Univ British Columbia, Dept Med, Div Resp Med, Vancouver, BC V6T 1Z4, Canada

[5] St Pauls Hosp, Ctr Heart Lung Innovat, Vancouver, BC V6Z 1Y6, Canada

[6] Univ British Columbia, Vancouver, BC V6Z 1Y6, Canada

[7] Dept Pediat, Div Resp Med, Vancouver, BC V6H 3N1, Canada

来源：

JOURNAL OF CYSTIC FIBROSIS | 2021年 / 20卷 / 01期

关键词：

Cystic fibrosis; Clinical trials; Research; Barriers; Facilitators;

D O I：

10.1016/j.jcf.2020.08.019

中图分类号：

R56 [呼吸系及胸部疾病];

学科分类号：

摘要：

There remains a limited understanding of the factors influencing clinical trial participation for individuals with Cystic Fibrosis (CF). A comprehensive survey was developed to examine the interests, preferences, and barriers/facilitators to research and clinical trial participation for CF patients. A consecutive sample of 198 CF adults attending the St. Paul's Hospital CF Clinic and parents of children with CF attending the BC Children's Hospital CF Clinic from Vancouver, Canada were surveyed. Parents of pediatric patients were less comfortable with blood collection, required more safety data prior to participating, and were more concerned about potential side effects. Very few respondents (<10%) appeared able/willing to fulfill the typical requirements to participate in a phase 1 clinical trial. Overall, there were more similarities than differences between the responses of adult and parents of pediatric CF patients. The patient-centered information can be used to inform the design of future clinical trials to enhance feasibility. (C) 2020 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.

引用

页码：57 / 60

页数：4

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