Who is represented? Racial and ethnic demographic reporting in clinical trials cited by NCCN testicular cancer guidelines.
TL;DR
Race and ethnicity data are rarely reported in clinical trials underpinning the NCCN Testicular Cancer Guidelines, and the near absence of demographic reporting impedes assessment of representativeness and may obscure disparities in access and outcomes.
Abstract
104 Background: Equitable cancer care requires transparent demographic reporting to assess the generalizability of evidence. We evaluated the frequency and patterns of race and ethnicity reporting in studies cited by the National Comprehensive Cancer Network (NCCN) Testicular Cancer Guidelines. Methods: We systematically audited all references cited by the NCCN Testicular Cancer Guidelines (accessed October 2025). For each citation, we recorded study design, publication year, country location, and whether race or ethnicity was reported. We identified clinical trials and grouped publication years into six periods (<2000, 2000 to 2004, 2005 to 2009, 2010 to 2014, 2015 to 2019, 2020 to 2024). Descriptive statistics were used. Race reporting was compared between United States and international trials with Fisher’s exact test. Results: Of 243 guideline citations screened, 48 were clinical trials. Race or ethnicity was reported in 2 of 48 trials (4.2%). Among United States–based trials, 2 of 13 reported race or ethnicity (15.4%) versus 0 of 32 international trials (Fisher two-sided p=0.079); location was unknown for 3 trials. Trial publications peaked in 2005 to 2009 (18 of 48, 37.5%). Reporting occurred in 1 trial from 2015 to 2019 and 1 trial from 2020 to 2024, with no reporting in earlier periods. Sample size data were available for 45 trials; median enrollment was 108 (interquartile range 46 to 254). Where reported, category definitions and completeness varied, limiting cross-study comparisons. Conclusions: Race and ethnicity data are rarely reported in clinical trials underpinning the NCCN Testicular Cancer Guidelines. The near absence of demographic reporting impedes assessment of representativeness and may obscure disparities in access and outcomes. Guideline committees, journals, and sponsors should adopt minimum reporting standards for race and ethnicity, require consistent category definitions, and ensure these data are captured in trial registries and publications to strengthen equity in evidence generation.