title: Five National Cancer Institute-designated cancer centers' data collection on racial/ethnic minority participation in therapeutic trials: a current view and opportunities for improvement.
abstract: BACKGROUND
  To ensure that National Institutes of Health-funded research is relevant to the population's needs, specific emphasis on proportional representation of minority/sex groups into National Cancer Institute (NCI) cancer centers' clinical research programs is reported to the NCI.
  
  
  METHODS
  EMPaCT investigators at 5 regionally diverse comprehensive cancer centers compared data reported to the NCI for their most recent Cancer Center Support Grant competitive renewal to assess and compare the centers' catchment area designations, data definitions, data elements, collection processes, reporting, and performance regarding proportional representation of race/ethnicity and sex subsets.
  
  
  RESULTS
  Cancer centers' catchment area definitions differed widely in terms of their cancer patient versus general population specificity, levels of specificity, and geographic coverage. Racial/ethnic categories were similar, yet were defined differently, across institutions. Patients' socioeconomic status and insurance status were inconsistently captured across the 5 centers.
  
  
  CONCLUSIONS
  Catchment area definitions and the collection of patient-level demographic factors varied widely across the 5 comprehensive cancer centers. This challenged the assessment of success by cancer centers in accruing representative populations into the cancer research enterprise. Accrual of minorities was less than desired for at least 1 racial/ethnic subcategory at 4 of the 5 centers. Institutions should clearly and consistently declare their primary catchment area and the rationale and should report how race/ethnicity and sex are defined, determined, collected, and reported. More standardized, frequent, consistent collection, reporting, and review of these data are recommended, as is a commitment to collecting socioeconomic data, given that socioeconomic status is a primary driver of cancer disparities in the United States.
authors.affiliation: Division of Cancer Prevention and Population Sciences, The University of Texas MD Anderson Cancer Center, Houston, Texas.
authors.forename: Ernest T
authors.initials: ET
authors.lastname: Hawk
authors.forename: Elizabeth B
authors.initials: EB
authors.lastname: Habermann
authors.forename: Jean G
authors.initials: JG
authors.lastname: Ford
authors.forename: Jennifer A
authors.initials: JA
authors.lastname: Wenzel
authors.forename: Julie R
authors.initials: JR
authors.lastname: Brahmer
authors.forename: Moon S
authors.initials: MS
authors.lastname: Chen
authors.forename: Lovell A
authors.initials: LA
authors.lastname: Jones
authors.forename: Thelma C
authors.initials: TC
authors.lastname: Hurd
authors.forename: Lisa M
authors.initials: LM
authors.lastname: Rogers
authors.forename: Lynne H
authors.initials: LH
authors.lastname: Nguyen
authors.forename: Jasjit S
authors.initials: JS
authors.lastname: Ahluwalia
authors.forename: Mona
authors.initials: M
authors.lastname: Fouad
authors.forename: Selwyn M
authors.initials: SM
authors.lastname: Vickers
mesh_terms: D002391:Catchment Area, Health; D002986:Clinical Trials as Topic / Q000379:methods*; D005260:Female; D006297:Health Services Accessibility; D054625:Healthcare Disparities / Q000208:ethnology*; D006801:Humans; D008913:Minority Groups; D054547:National Cancer Institute (U.S.); D009369:Neoplasms / Q000628:therapy*; D018579:Patient Selection; D011203:Poverty; D044469:Racial Groups; D012107:Research Design; D018426:SEER Program; D012959:Socioeconomic Factors; D014481:United States; D035862:Vulnerable Populations; D014930:Women
keywords: Cancer Center Support Grant; catchment area; clinical trials; data definitions; health disparities; minority enrollment; quantitative data