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Lack of Diversity and Participation in Adult Clinical Trials

Lack of Diversity and Participation in Adult Clinical Trials
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Published on February 19, 2021

Why Are Adult Clinical Trials Less Diverse Than Pediatric Trials?

Clinical trials are rigorously designed to help research scientists find new ways to prevent, diagnose and treat cancer and its side effects. Thousands of cancer clinical trial studies are currently recruiting in the United States, but fewer than five percent of adult patients enroll in trials.1 And many, if not most, of the participants in adult clinical trials are white.2

Racial and ethnic diversity in cancer clinical trials for adults is lagging with no single cause, although implicit bias, explicit racism and access all play a role. However, the oncology community is more committed than ever to making these issues known and creating more opportunities for patients of all backgrounds.

Personalized therapy has become a buzzy term among research scientists, which is one way of saying that they are designing customized care; a one-size-fits-all approach is no longer the norm. However, to find out with certainty if specific therapies work better in people of a particular ethnicity or race, the trials must include a diverse range of participants.

“As clinicians, we are committed to providing evidence-based, high-quality cancer care to every patient, every day, everywhere. But, if clinical trials don’t represent the individuals we treat, including those from racial, ethnic, and other minority populations, the state of science suffers, and patients with life-threatening conditions may not receive the best — perhaps only — treatment option for their condition,” said Dr. Lori J. Pierce, FASTRO, FASCO, ASCO President, 2020-2021.3

Pediatric clinical trials enroll more than 50 percent of eligible patients and have always been more inclusive and diverse. These two factors have contributed to a decline in pediatric cancer mortality rates during more than four decades, while rates for adults have only been declining for the past 20 years.

The Children’s Oncology Group (COG) keeps a running list of clinical trials in the pediatric setting, including acute lymphoblastic leukemia (ALL), acute myeloid leukemia (AML), Hodgkin lymphoma (HL), non-Hodgkin lymphoma (NHL), brain cancers, sarcoma (cancer of the bone and connecting tissue), survivorship and more.4 For the full list, visit COG Clinical Trial Summaries.

Old Ideas and Debunked Myths

It’s not yet clear why pediatric trials are more diverse and have higher participation rates, but antiquated thinking could be to blame. For many years, clinical trials were thought of as a last-ditch effort for cancer care when other lines of therapy failed to suppress or cure the disease. In contrast, today’s clinical trials are numerous, effective and sometimes even offered before standard treatments.

There are also frightening myths associated with clinical trials that may prevent adults from participating.

“People are worried that they are going to be given a placebo without their knowledge or be exposed to substances that may not be helpful, so one of the things that is very important is to create an awareness of what cancer research is like and what the ethics are that we hold ourselves to when we design the trials,” said Dr. Lidia Schapira, associate professor of medicine (oncology) at Stanford University, in an interview about the importance of diversity in clinical trials.5

Education is key. Patients need to know which clinical trials exist, which ones may be right for them and how to sign up. Factors such as the location of the trial, transportation, childcare issues, work commitments and understanding of the trial process can all affect whether a person with cancer agrees to participate. Language barriers may also be a factor for both the doctor and patient. Stanford University provides clinical trial information in English, Spanish, Chinese and Russian languages.5

Tips for Learning About and Finding Clinical Trials

There are steps adults with cancer can take to learn more about potential clinical trials.

  • Know your cancer type and stage and obtain a copy of your pathology report.
  • Ask your oncologist if a clinical trial is right for you and what tests are involved.
  • Visit our Find a Clinical Trial page to search for clinical trials.
  • Learn about eligibility criteria such as age and physical fitness.
  • Find out if telehealth visits are an option or if you would need to travel to participate.
  • See if there are financial resources that can help assist with travel and other costs.
  • Ask what the risks are to participating.

Two-time cancer survivor and Patient Power co-founder, Andrew Schorr, gives first-hand tips:

“Remember to be a savvy consumer and make sure all your options — including participation in a clinical trial — are on the table as you go along your cancer journey. A clinical trial could be an appropriate option at any point, but it may require you to speak up or seek that option out. It could be life-extending.”

~Lauren Evoy Davis

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References:

1Unger JM, et al. Role of Clinical Trial Participation in Cancer Research: Barriers, Evidence, and Strategies. Am Soc Clin Oncol Educ Book. (2016) 35: 185–198. doi: 10.14694/EDBK_156686

2Racial and Ethnic Minorities in Clinical Trials. U.S. Food & Drug Administration. 2020.

3Health Disparities. Clinical Cancer Advances. ASCO. 2021.

4Children’s Oncology Group. Clinical Trial Summaries. COG.

5Diversity in Clinical Trials. Stanford University.


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This article is part of Patient Power’s ongoing commitment to educate and advocate for healthcare equity and inclusiveness for all impacted by cancer and to continually grow our outreach and support.

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