Today, May 20, 2021, is being observed around the world as Clinical Trials Day.
We at Sickle Cell 101 join in today’s celebration and salute all those who have and continue to contribute to clinical trials and development of therapies for sickle cell but also acknowledge that there is more work to be done to improve research for our sickle cell community.
In honor of Clinical Trials Day and as part of our commitment to changing the research landscape and perception of clinical trials in our sickle cell community, we are are excited to share the launch of Sickle Cell Studies, a patient-friendly research platform dedicated to helping all stakeholders in the sickle cell community identify, discuss and learn about all ongoing research on sickle cell disease and sickle cell trait globally.
Our motivation to launch this platform is fueled by the fact that even after decades of identifying sickle cell as the first molecular genetic disorder, the number of effective treatments and curative options available to the millions of people who live with or are affected by this disorder have remained low. Sickle Cell Studies is designed to address this need and essentially serves the sickle cell community in these five main categories below:
- Present ongoing clinical trials in a patient-friendly language to individuals in the sickle cell community that might be interested in participating
- Highlight ongoing clinical trials to improve clinical trial education and awareness in the sickle cell community
- Provide a patient-friendly definition of all key terminologies frequently used in all phases of clinical research
- Provide a medium for all individuals interested in enrolling in a clinical trial to ask clarifying questions to the researchers and recruiting partners
- Provide a platform for patients, caregivers, advocates and healthcare providers to participate in surveys to share their thoughts, input, and concerns on relevant topics highlighted by the sickle cell community
Sickle Cell Studies is developed and led by the sickle cell patient community and is our commitment to doing our part to address the long-standing mistrust and disconnect between clinical trial researchers and the sickle cell community. This platform ensures that the patient voice and input are echoed at every step throughout the research process.
With our broad reach to over 45,000 followers, and our active engagement in connecting and educating the sickle cell community – both on and off social media globally, Sickle Cell Studies is already making a difference in our community.
We invite you to partner with us in this new venture to boost clinical trial access by educating the sickle cell community and mobilizing its members to actively learn and participate in clinical research when appropriate. Please share the resources attached to this email with your network or contact [email protected] for additional details.
We are excited about the opportunities that Sickle Cell Studies provides and we look forward to working with you to change and improve research to make more treatments and curative options available to our deserving global sickle cell community.
Sincerely,
Dr. Stephen Boateng
Director of Research and Partnerships
Sickle Cell 101 Research Team