title: Improving diversity in cancer research trials: the story of the Cancer Disparities Research Network.
abstract: 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.
authors: 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, m-simon2@northwestern.edu.
authors: Melissa A
authors: MA
authors: Simon
authors: Erika E
authors: EE
authors: de la Riva
authors: Raymond
authors: R
authors: Bergan
authors: Carrie
authors: C
authors: Norbeck
authors: June M
authors: JM
authors: McKoy
authors: Piotr
authors: P
authors: Kulesza
authors: XinQi
authors: X
authors: Dong
authors: Julian
authors: J
authors: Schink
authors: Linda
authors: L
authors: Fleisher
mesh_terms: D018070:Biological Specimen Banks; D005006:Ethnicity / Q000706:statistics & numerical data*; D006297:Health Services Accessibility / Q000458:organization & administration / Q000592:standards*; D054625:Healthcare Disparities / Q000458:organization & administration* / Q000592:standards*; D006801:Humans; D020380:Needs Assessment; D009369:Neoplasms / Q000175:diagnosis / Q000208:ethnology / Q000517:prevention & control*