Research 101: Research for Sickle Cell Educational Initiative
The Research 101 Educational Initiative by Sickle Cell 101 (SC101) delves into the foundation of sickle cell studies and research, aiming to provide fundamental information essential for understanding and engaging with clinical trials and research for sickle cell.
With a primary objective of encouraging discovery, engagement, and informed decision-making within the community, this initiative strives to empower individuals and families affected by sickle cell with the knowledge and resources necessary to actively participate in the advancement of research and clinical trials. Through a comprehensive approach, the Research 101 initiative seeks to foster a deeper understanding of sickle cell research, ultimately driving progress towards more and improved treatments and outcomes for individuals living with sickle cell.
2023-2024 Research 101 Educational Initiative
Initiative Key Topics
At Sickle Cell 101, we develop our educational programming around the topics that matter most to the sickle cell community. This year for Research 101, we are focusing on the following key areas based on insights and feedback from patients, families, and providers:
- Understanding Clinical Research for Sickle Cell: Background and history of clinical trials for sickle cell, including the significance of monumental trials like the penicillin trial, as well as the roles and regulations of food and drug entities worldwide such as the FDA, EMA, NICE, and others
- Emerging Therapies and Approaches in Sickle Cell: Delving into late-stage drug therapies and current approaches for developing disease-modifying drug therapies, while highlighting updates on the latest advancements in research.
- Community Participation in Clinical Trials: Featuring patient experiences in participating in clinical trials and the importance of collecting data from diverse popualtions.
Our goal is to empower patients, families and providers to have informed discussions on engaging and in research for sickle cell. We thank the community for guiding our programming and helping us deliver the most meaningful education possible.
Initiative Components
To effectively educate the community on key topics around research for sickle cell, our Research 101 initiative for this year will include the following components:
Webinar: Informational webinars presenting the latest evidence-based research on curative approaches from leading medical experts.
Fact sheets: Downloadable and printable fact sheets summarizing different curative options, risks and benefits, and accessibility considerations.
Research Newsletter: Updates, research initiatives, alerts and education for clinical trials and survey studies. Subscribe here.
Improvements to scdstudies.com: Improvement and updates to our web-resource hub for sickle cell research.
Social media: Social media and newsletter outreach supplying initiative updates.
Research 101 Sponsors and Collaborators
All Hands on Deck: As part of our dedication to providing fair-balanced information on research for sickle cell, we are grateful to work with the following sponsors and collaborators.
Our sincerest thanks to our 2023-2024 sponsors, including Pfizer, and Agios. By working together, we can ensure our community receives comprehensive and accurate information on research for sickle cell.
Sponsors
Disclaimer: The information presented in this initiative was independently developed by our organization. It does not necessarily represent the views or opinions of those who have provided funding (sponsors) or other content contributors (collaborators).
While we value the support of our sponsors and collaborators, we retain full editorial control over the program content. Our educational materials are created based on the latest scientific evidence and best practices, not the commercial interests of sponsors.
We aim to provide fair, balanced information on all available treatment options. If you have any concerns about bias in the program content, please contact us directly. We welcome feedback to ensure the integrity of our educational mission.