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Barriers to Hematopoietic Cell Transplantation Clinical Trial Participation of African American and Black Youth With Sickle Cell Disease and Their Parents

Omondi, Nancy A. MBA, MS*; Ferguson, Stacy E. Stickney MSW, LICSW*; Majhail, Navneet S. MD, MS*,†; Denzen, Ellen M. MS*; Buchanan, George R. MD; Haight, Ann E. MD, FAAP§; Labotka, Richard J. MD; Rizzo, J. Douglas MD, MS; Murphy, Elizabeth A. EdD, RN*

Journal of Pediatric Hematology/Oncology: May 2013 - Volume 35 - Issue 4 - p 289–298
doi: 10.1097/MPH.0b013e31828d5e6a
Original Articles

African Americans and Blacks have low participation rates in clinical trials and reduced access to aggressive medical therapies. Hematopoietic cell transplantation (HCT) is a high-risk but potentially curative therapy for sickle cell disease (SCD), a disorder predominantly seen in African Americans. We conducted focus groups to better understand participation barriers to HCT clinical trials for SCD. Nine focus groups of youth with SCD (n=10) and parents (n=41) were conducted at 3 sites representing the Midwest, South Atlantic, and West South Central US. Main barriers to clinical trial participation included gaps in knowledge about SCD, limited access to SCD/HCT trial information, and mistrust of medical professionals. For education about SCD/HCT trials, participants highly preferred one-on-one interactions with medical professionals and electronic media as a supplement. Providers can engage with sickle cell camps to provide information on SCD/HCT clinical trials to youth and local health fairs for parents/families. Youth reported learning about SCD through computer games; investigators may find this medium useful for clinical trial/HCT education. African Americans affected by SCD face unique barriers to clinical trial participation and have unmet HCT clinical studies education needs. Greater recognition of these barriers will allow targeted interventions in this community to increase their access to HCT.

*National Marrow Donor Program

Center for International Blood and Marrow Transplant Research and University of Minnesota, Minneapolis, MN

The University of Texas Southwestern Medical Center, Children’s Medical Center, Dallas, TX

§Children’s Healthcare of Atlanta, Emory University School of Medicine, Atlanta, GA

Chicago Sickle Cell Center, University of Illinois, Chicago, IL

Center for International Blood and Marrow Transplant Research, Medical College of Wisconsin Clinical Cancer Center, Milwaukee, WI

Supported by the National Marrow Donor Program.

The authors declare no conflict of interest.

Reprints: Ellen M. Denzen, MS, Health Services Research, National Marrow Donor Program, 3001 Broadway St NE, Suite 100, Minneapolis, MN 55413 (e-mail:

Received March 22, 2012

Accepted February 14, 2013

© 2013 Lippincott Williams & Wilkins, Inc.