Resources – My Sickle Cell Research Xplained


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Looking for more information? Here’s a list of some of the resources we’ve mentioned in our Facebook group and our blogs. We hope it helps you on your journey to learning more about sickle cell disease research!

Sickle cell disease resources

Improved care for sickle cell patients is top priority

A new report from the National Academies of Sciences, Engineering, and Medicine focuses on just that! They suggest that the NIH and other agencies work with community-based organizations to educate about the importance of clinical research, and motivate people to participate in clinical trials! #change #hope #sicklecelldisease

Nobel Peace Prize for sickle cell research

Job well done! The Nobel Prize in Chemistry was awarded to 2 female scientists who helped discover the tool for gene editing that has been used in sickle cell disease research.

Breaking news for those with sickle cell disease!

Have you seen the latest developments with a petition filed with the Food and Drug Administration (FDA) to help speed the process of approval of new drugs for sickle cell disease?! It's TRUE!

How to find a sickle cell clinical trial

Here’s something we hear all the time: “I tried looking for a clinical trial, but I couldn’t find one.” If you need some further guidance, hear from Shirley, who gives a short 30-second summary on how you might be able to find a clinical trial

Why participate in sickle cell clinical trials?

We’ve found this pamphlet from the American Society of Hematology (ASH) very helpful in getting a big picture overview of why one would participate in sickle cell clinical trials and what’s involved

Campaign for clinical trial diversity

Unfortunately, racial and ethnic minorities are seriously underrepresented in clinical research. If you’re asking yourself, “Why is that important?,” you may want to take a quick moment to learn about the U.S. Food and Drug Administration (FDA) campaign to promote diversity in clinical trials. Use #clinicaltrialschampion to spread awareness about the need for diversity in clinical trials!

Why diversity in clinical trials is so important

If you remember, we shared a video of Shirley, who participated in clinical research for sickle cell disease. Well, one of the reasons Shirley wanted to be a part of clinical research was because she knew clinical trials need people who represent the type of patients who may benefit from the study treatment.

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