Improving diversity in cancer research trials: the story of the Cancer Disparities Research Network.
Improving diversity in cancer research trials: the story of the Cancer Disparities Research Network.
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DOI：
10.1007/s13187-014-0617-y
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发表时间：
2014-06
期刊：
影响因子：
--
通讯作者：
Fleisher L
中科院分区：
文献类型：
--
作者：
Simon MA;de la Riva EE;Bergan R;Norbeck C;McKoy JM;Kulesza P;Dong X;Schink J;Fleisher L
少数种族和族裔以及服务不足的人群参与临床试验是科学创新与改善医疗保健服务和健康结果之间的关键联系。然而，这些人口群体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，以提高少数民族和服务不足的人群参与生物库研究。在2011年2月至10月期间，我们进行了一次区域评估，以确定整个CDRN的癌症试验和生物库研究的挑战和机遇。来自10个CDRN生物储存设施的代表完成了一项在线调查，评估了其设施的少数生物标本收集，生物库实践和教育/外展计划。8个设施的代表也参加了与利益攸关方的访谈。大多数（70%）机构报告称，标本可用于研究，尽管这些标本中只有十分之一来自非白人患者。大多数机构收集了患者的年龄，性别，种族，病史和种族样本;然而，不到一半的机构还收集了家庭健康史，教育水平，家庭收入或主要语言。此外，很少有机构收集亚洲或西班牙裔亚组信息。只有少数报告了专门针对少数民族和服务不足人群的生物标本收集推广计划。生物标本主任和管理人员表示，资金，生物标本共享程序，和标准化的障碍限制了他们的设施在生物标本采集计划的合作，尽管他们的极大兴趣。这些发现表明，CDRN可以提供合作，资源共享和培养研究思路的机会，以解决生物标本研究中的癌症差异。
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 – 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 the fostering of research ideas to address cancer disparities in biospecimen research.
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DOI：
10.1007/s13187-012-0322-7
发表时间：
2012-04
期刊：
Journal of cancer education : the official journal of the American Association for Cancer Education
影响因子：
--
作者：
Kaur JS;Petereit DG
通讯作者：
Petereit DG
影响因子：
1.6
作者：
Hill, Teresa Garrett;Briant, Katherine Josa;Vinson, Eric
通讯作者：
Vinson, Eric
影响因子：
6.2
作者：
Myers, Ronald E.;Berry, Audrey
通讯作者：
Berry, Audrey
影响因子：
4.4
作者：
Fleisher, L;Kornfeld, J;Bradley, A
通讯作者：
Bradley, A
影响因子：
1.6
作者：
Fleisher, Linda;Kornfeld, Julie;Squiers, Linda
通讯作者：
Squiers, Linda