title: Clinical research participation among adolescent and young adults at an NCI-designated Comprehensive Cancer Center and affiliated pediatric hospital.
abstract: Minimal clinical trial participation among adolescents and young adults (AYAs) with cancer limits scientific progress and ultimately their clinical care and outcomes. These analyses examine the current state of AYA clinical research participation at a Midwestern comprehensive cancer center and affiliated pediatric hospital to advise program development and increase availability of trials and AYA participation. Enrollment is examined across all diagnoses, the entire AYA age spectrum (15-39), and both cancer therapeutic and supportive care protocols.
  
  
  
  his study was a retrospective review of electronic medical records via existing databases and registries for all AYAs. Data were collected for AYAs seen by an oncologist at the adult outpatient cancer center or at the pediatric hospital between the years 2010 and 2014. Descriptive statistics and logistic regression analyses were conducted to characterize this sample.
  
  
  
  In the pediatric setting, 42.3% of AYAs were enrolled in a study compared to 11.2% in the adult setting. Regression analyses in the pediatric setting revealed that AYAs with private insurance or Caucasian race were more likely to participate. Within the adult setting, ethnicity, race, insurance, and diagnosis were associated with study participation; 54.8% of study enrollments were for cancer therapeutic and 43.4% for supportive care studies.
  
  
  
  These results are comparable to previously published data and support the need for new local and national AYA initiatives to increase the availability of and enrollment in therapeutic clinical trials. The same is true for supportive care studies which play a crucial role in improving quality of life.
authors.affiliation: Northwestern University Feinberg School of Medicine, Chicago, IL, 60611, USA. ssanfor1@nm.org.|Robert H. Lurie Comprehensive Cancer Center of Northwestern University, 675 N. St. Clair Street Suite 21-100, Chicago, IL, 60611, USA. ssanfor1@nm.org.
authors.forename: Stacy D
authors.initials: SD
authors.lastname: Sanford
authors.affiliation: Northwestern University Feinberg School of Medicine, Chicago, IL, 60611, USA.
authors.forename: Jennifer L
authors.initials: JL
authors.lastname: Beaumont
authors.affiliation: Northwestern University Feinberg School of Medicine, Chicago, IL, 60611, USA.
authors.forename: Mallory A
authors.initials: MA
authors.lastname: Snyder
authors.affiliation: Northwestern University Feinberg School of Medicine, Chicago, IL, 60611, USA.|Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, 60611, USA.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Reichek
authors.affiliation: Wake Forest School of Medicine, Winston-Salem, NC, 27157, USA.
authors.forename: John M
authors.initials: JM
authors.lastname: Salsman
mesh_terms: D000293:Adolescent; D000328:Adult; D035843:Biomedical Research / Q000379:methods*; D002173:Cancer Care Facilities; D016208:Databases, Factual; D005260:Female; D006776:Hospitals, Pediatric; D006801:Humans; D008297:Male; D054547:National Cancer Institute (U.S.); D009369:Neoplasms / Q000401:mortality / Q000628:therapy*; D011788:Quality of Life; D012042:Registries; D012189:Retrospective Studies; D014481:United States; D055815:Young Adult
keywords: Adolescents; Cancer survivors; Clinical trials; Young adults