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SDS & Science Snapshots (2024-02-17)

In this issue: Why does diversity matter in rare disease research and how can I get involved?

Welcome to our timely updates on all things SDS, Science, and Advocacy. We bring you a digest of recent scientific publications, conferences, and other newsworthy content - all relevant to SDS - with links to more details and learning opportunities. Are you interested in anything specific? Did we miss something? Let us know. Email genetics@SDSAlliance.org or message us on Facebook! This is all for you!



Embracing Diversity in Clinical Research: A Global Perspective


As we honor Black History Month in the United States, it's essential to recognize the importance of diversity in clinical research and trials. Diversity in this context refers to including people from all walks of life – different races, ethnicities, backgrounds, and countries – in research studies. Why does this matter for those of us in the rare disease community?


Embracing individuals from diverse backgrounds in clinical research is fundamental for advancing medical knowledge and improving healthcare outcomes worldwide. When clinical trials include people from diverse backgrounds, it helps scientists understand how treatments work for everyone. Every person is unique, and factors like where they live, their genes, and their culture can affect how they respond to treatments. By including a wide range of people in research, scientists, physicians, and other researchers can make sure that treatments are safe and effective for everyone, including those with rare diseases.


Below is a video from a session at the 2023 Global Genes RARE Health Equity Forum: Understanding the Patient Perspective – How to Ensure Diverse Patient Participation in Clinical Trials and Research. In this session, the panelists discuss how patients can/should be on the front lines with their community ecosystem, and what that relationship should look like between community leaders and researchers.



While we often hear about the need for diversity in terms of race and ethnicity, it's equally important to consider a broader global perspective. Rare diseases affect people all over the world, and what works for one person might not work for another. By involving researchers from different countries, we can learn from each other and find better treatments that work for everyone, no matter where they live.


At Shwachman-Diamond Syndrome Alliance, we recognize that our community is diverse, encompassing individuals of various racial, ethnic, and cultural backgrounds from around the world, and we believe that everyone's voice deserves to be heard. By actively working together and engaging with our diverse global community, we aim to accelerate progress toward improved treatments and outcomes for individuals with SDS across the world. Together, let's continue to champion diversity and inclusivity in clinical research, ensuring that everyone has access to equitable and effective healthcare.


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The Rare Disease Diversity Coalition (RDDC) serves as a fantastic resource to the rare disease community – bringing together rare disease experts, patient organizations, health and diversity advocates, and industry leaders with a deep knowledge of the medical, industry, regulatory, and cultural challenges facing people of color with rare disease.

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Check out the EveryLife Foundation for Rare Diseases Rare Diversity Hub for information about current efforts to increase diversity in clinical research and learn how you can get involved!

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For more information about the importance of engaging a diverse global community in clinical research and trials, you can listen to these podcasts from Global Genes in addition to watching other sessions from the 2023 Global Genes RARE Health Equity Forum:


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