Simon Melissa A, de la Riva Erika E, Bergan Raymond, Norbeck Carrie, McKoy June M, Kulesza Piotr, Dong XinQi, Schink Julian, Fleisher Linda
Department of Obstetrics & Gynecology and Robert H. Lurie Comprehensive Cancer Center, Northwestern University Feinberg School of Medicine, 633 N. St. Clair, Suite 1800, Chicago, IL, 60611, USA,
J Cancer Educ. 2014 Jun;29(2):366-74. doi: 10.1007/s13187-014-0617-y.
The participation of racial and ethnic minorities and underserved populations in clinical trials is a critical link between scientific innovation and improvements in health care delivery and health outcomes. However, these population groups continue to be underrepresented in research. We describe the development of the Cancer Disparities Research Network (CDRN) to improve minority and underserved populations' participation in biobanking research. Between February and October 2011, we conducted a regional assessment to identify challenges and opportunities for cancer trials and biobanking research across the CDRN. Representatives from ten CDRN biorepository facilities completed an online survey assessing their facilities' minority biospecimen collection, biobanking practices, and education/outreach initiatives. Representatives of eight facilities also participated in stakeholder interviews. The majority (70%) of facilities reported that specimens were available for research, although only one tenth of these specimens were from non-White patients. Most facilities collected a patient's age, gender, race, medical history, and ethnicity with samples; however, less than half also collected family health history, education level, household income, or primary language spoken. In addition, few institutions collected Asian or Hispanic subgroup information. Only a few reported biospecimen collection outreach programs specifically targeting minority and underserved populations. Biospecimen directors and administrators indicated that funding, biospecimen sharing procedures, and standardization barriers limited their facilities from collaborating in biospecimen collection programs, despite their great interest. These findings suggest that the CDRN can provide opportunities for collaboration, resource sharing, and fostering of research ideas to address cancer disparities in biospecimen research.
种族和少数族裔以及服务不足人群参与临床试验是科学创新与医疗保健服务及健康结果改善之间的关键环节。然而，这些人群在研究中的代表性仍然不足。我们描述了癌症差异研究网络（CDRN）的发展情况，以提高少数族裔和服务不足人群对生物样本库研究的参与度。在2011年2月至10月期间，我们进行了一项区域评估，以确定CDRN范围内癌症试验和生物样本库研究的挑战和机遇。来自十个CDRN生物样本库设施的代表完成了一项在线调查，评估其设施的少数族裔生物样本采集、生物样本库操作以及教育/外展举措。八个设施的代表还参与了利益相关者访谈。大多数（70%）设施报告称有样本可用于研究，尽管这些样本中只有十分之一来自非白人患者。大多数设施在采集样本时收集了患者的年龄、性别、种族、病史和族裔信息；然而，不到一半的设施还收集了家族健康史、教育水平、家庭收入或主要使用语言。此外，很少有机构收集亚洲或西班牙裔亚组信息。只有少数机构报告了专门针对少数族裔和服务不足人群的生物样本采集外展项目。生物样本库主任和管理人员表示，尽管他们兴趣浓厚，但资金、生物样本共享程序和标准化障碍限制了他们的设施参与生物样本采集项目的合作。这些发现表明，CDRN可以为合作、资源共享和促进研究思路提供机会，以解决生物样本研究中的癌症差异问题。
