Including Everyone in Clinical Trials for Myelodysplastic Syndromes (MDS)
*Please note: This slide show is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always consult your doctor about any questions you may have regarding a medical condition.
What is a clinical trial?
A clinical trial is a research study in which patients volunteer to receive a new drug or treatment before it is available to the public or approved by authorities.
Therapeutic clinical trials help researchers find new ways to diagnose, treat, and prevent diseases, including myelodysplastic syndromes, or MDS.
Why are MDS clinical trials important?
Clinical trials are important to better understand the biology of MDS and find more treatments.
Why are MDS clinical trials important?
1 in every 3 people with MDS have a type that increases the risk of developing a disease called acute myeloid leukemia (AML).1
Few people volunteer for cancer clinical trials
Only 6 in every 100 people with all types of cancer volunteer for a clinical trial.2
In addition, a large study found that most cancer trial volunteers are non-Hispanic white people. African American and Hispanic people are less likely to take part in cancer clinical trials.3 It is important for all groups to take part in clinical trials.
MDS affects older adults, who are needed to volunteer
The same large study found that about twice as many people under 65 took part in cancer clinical trials as older people.3
This is a concern for MDS, which is most common in people in their 70s.
4
MDS, race, and sex
MDS is most common in White people and more common in men than women. However, women, Black and Hispanic people, and people from groups such as Native Americans are important to MDS trials because people from these groups also develop MDS.5
Different groups may develop different MDS types
Some research suggests that Black and White people may tend to develop different types of MDS. This can affect diagnosis and treatment for people from each group.6
To know what is most effective, MDS clinical trials need diverse participants.
Benefits of MDS clinical trials for everyone
Clinical trials offer everyone with MDS the chance to try treatments that are not yet available to the public.
People of all races deserve the same opportunities to benefit from new treatments. These treatments will benefit people with similar genetics in the future.
Why do trials tend to include people from some groups more than others?
Reasons that people from other groups may not volunteer as often include not knowing trials are available, living a long way from clinical trial sites, not having the time or energy to take part, and not meeting health requirements for a trial.7
Reasons specific groups may avoid clinical trials
Other reasons for not joining trials include not being able to take time off for trial appointments; not trusting doctors or researchers; and belonging to a group such as American Indians, Black Americans, and First Peoples whose members have been mistreated for medical research in the past, including by the government.8
Finding a doctor you can talk with about clinical trials
It is important to have a doctor you can trust and talk with easily about your MDS and clinical trial opportunities.
You may feel more comfortable with a doctor of your race or ethnicity.
What is "shared decision-making"?
Discussing clinical trials can be part of shared decision-making in MDS care. You and your doctor discuss your options and decide together what makes the most sense for your goals and type of MDS.
If possible, look for an MDS Center of Excellence. Doctors at these centers have specialized expertise in treating MDS and are more likely to be able to help you find clinical trials.
Including everyone improves outlooks for everyone
If you belong to a group that less frequently develops MDS, few people like you may have had access to clinical trials before now.
Taking part in an MDS trial can help you and help researchers learn about safety and effectiveness of new MDS treatments for people with your background. This will improve care for everyone.
Finding MDS clinical trials
If you are interested in joining a trial, speak with your medical team. They can help you find a trial right for you.
You can also search for clinical trials by visiting ClinicalTrials.gov or the MDS Foundation's clinical trials finder at
mds-foundation.org.
References
- MDS Foundation. What is MDS?
https://www.mds-foundation.org/what-is-mds
- Unger JM, Fleury M. Nationally representative estimates of the participation of cancer patients in clinical research studies according to the commission on cancer. J Clin Oncol. 2021;39(28) Suppl 74.
https://ascopubs.org/doi/abs/10.1200/JCO.2020.39.28_suppl.74
- Duma N, Vera Aguilera J, Paludo J, Haddox CL, Gonzalez Velez M, Wang Y, Leventakos K, Hubbard JM, Mansfield AS, Go RS, Adjei AA. Representation of Minorities and Women in Oncology Clinical Trials: Review of the Past 14 Years. J Oncol Pract. 2018 Jan;14(1):e1-e10.
- American Cancer Society. Key statistics for myelodysplastic syndromes.
https://www.cancer.org/cancer/types/myelodysplastic-syndrome/about/key-statistics.html
- Goksu SY, Khatib J, Goksu BNB, Wang R, Patel PA, Vusirkala M, Cole S, Seyhanli A, Ozer M, Collins RH, Chung S, Zeidan AM, Madanat YF. Racial and ethnic disparities have a significant impact on the outcomes of patients with myelodysplastic syndromes: A population-based study. Blood. 2020;136(Suppl 1):2-3.
https://ashpublications.org/blood/article/136/Supplement%201/2/471978/Racial-and-Ethnic-Disparities-Have-a-Significant
- Lesegretain A, Brunner A, King AJ, Laadem A, Fell G, Fathi AT. Comparison of demographics, disease characteristics, and outcomes between Black and White patients with myelodysplastic syndromes: A population-based study. Leuk Res. 2023 Feb;125:107006.
- Bewersdorf JP, Zeidan AM. Good but not good enough: Clinical trial participation of patients with myelodysplastic syndromes. Cancer. 2020 Nov 1;126(21):4664-4667.
- Yates I, Byrne J, Donahue S, McCarty L, Mathews A. Representation in Clinical Trials: A Review on Reaching Underrepresented Populations in Research. Clinical Researcher [online]. 2020 Aug;34(7).
https://acrpnet.org/2020/08/representation-in-clinical-trials-a-review-on-reaching-underrepresented-populations-in-research
This slide show provides an overview of the importance of
including everyone in clinical trials for myelodysplastic syndromes (
MDS). Researchers are working hard on new ways to screen for, diagnose, and treat MDS for everyone. However, only 6 in every 100 people with all types of cancer volunteer for a clinical trial. Some research suggests that people of different ethnicities may tend to develop
different types of MDS. This can affect diagnosis and treatment for people from each group. Therefore to know what is most effective,
MDS clinical trials need diverse participants and it is important for all groups to take part in clinical trials. Click through to learn about how clinical trials can offer everyone with MDS
the
chance to try treatments that are not yet available to the public. Be sure to ask your doctor about how taking part in an MDS clinical trial can help you and help researchers learn about safety and effectiveness of new MDS treatments and improve care for everyone.
-
Share with family and friends:
Click here to take our SURVEY
Your feedback is important to us! We will use your feedback to develop future areas of content about MDS which will help other patients, caregivers and families.
