Historically, clinical trials have lacked diverse representation in general and in myeloma clinical trials in particular. In the U.S., approximately 20% of all myeloma patients are of African descent, but only 5%–8% of patients in myeloma clinical trials are of African descent.
Why Diversity in Myeloma Clinical Trials Matters
- All patients of all races and ethnicities should be able to benefit from clinical trials.
- Diverse patient representation in clinical trials is required to ensure that the outcomes apply to all patients.
- Reasons for underrepresentation in clinical trials are complex and include the following:
- systemic racism
- accessibility of clinical trials
- sensitivity to diversity by medical professionals
- misconduct in medicine in the past
- the lack of trust in the system, and more
Learn more about Disparities in Access to Clinical Trials and New Therapies.
How is the IMF’s M-Power Project Working to Ensure Diversity in Clinical Trials?
The IMF’s M-Power Project brings together regulators, pharmaceutical companies, and healthcare systems and providers, as well as patient advocates and their care partners.
Best practices are being developed for designing clinical trials. These best practices include the following:
- appointing diversity officers
- setting appropriate patient accrual
- engaging the community at large
- including non-traditional clinical trial sites to improve access to all
Visit mpower.myeloma.org for more information.
Optimal Partnership of Patients and Providers
The critical “frontlines” of clinical trials are found in the discussions between doctors and patients and their care partners. The following tips can help myeloma patients communicate with their doctors as they consider participating in a clinical trial:
- Talk openly and honestly with your doctor. Discuss the purpose of the proposed clinical trial. Make sure to also discuss its potential benefits and the possible risks.
- Include family members or other trusted individuals who can help you with decision-making in your discussion.
- Be aware of how the history of mistrust of the medical establishment may influence your thinking about clinical trials.
- Do not rush the discussion. Ask all your questions and raise all your concerns, and make sure that they are addressed.
- Engage with local and national advocacy groups, such as the IMF. Also, take part in support groups that encourage dialogue and foster your understanding of clinical trials.
- Be sure that you understand the discussions. Request that explanations are repeated or presented to you in ways that you are comfortable with. If your native language is not English, you can ask that a translator is provided to you.
- Secure as much support as possible for the coordination of participating in a clinical trial. These logistics may include travel assistance, home care, meals, accommodations, and so forth.
- Have a clear understanding of financial implications brought about by the clinical trial, if any.
What's Next?
The International Myeloma Foundation medical and editorial content team
Comprised of leading medical researchers, hematologists, oncologists, oncology-certified nurses, medical editors, and medical journalists, our team has extensive knowledge of the multiple myeloma treatment and care landscape.
Additionally, the content on this page is medically reviewed by myeloma physicians and healthcare professionals.
Last Medical Review: May 24, 2024