Phoenix Children’s is excited to announce a groundbreaking collaborative research project focusing on the population of individuals with Sickle Cell Disease (SCD) in Arizona. This initiative, conducted in partnership with the Centers for Disease Control and Prevention (CDC), Arizona State University’s Center for Health Information and Research (CHiR), Arizona Department of Health Services (AZDHS), Banner Health, the Sickle Cell Foundation of Arizona and members of the sickle cell community, aims to understand and learn about SCD at the population level in our state.
The Sickle Cell Data Collection (SCDC) initiative’s primary goals include to identifying resource challenges and using the findings to advocate for policy changes that will positively impact the sickle cell community in Arizona.
Uncovering Insights to Empower Sickle Cell Patients
ASU’s Center for Health Information and Research will serve as the data hub for this project. Their mission is to collect and analyze data from multiple sources, ensuring personal identifiers are removed. This will enable them to provide comprehensive insights into population locations, resource utilization, gaps in available services and other critical factors. These results will educate partners on the challenges faced by sickle cell patients across Arizona.
Unveiling Hidden Gems: Insights from Key Project Figures
 | Trung “Joe” Huynh, office chief with the AZDHS Newborn Screening Program, has been dedicated to ensuring the safety of newborns in Arizona through thorough testing. Although he has been directly involved in sickle cell disease work for just over two years, his commitment to improving healthcare outcomes is unwavering. Huynh believes that “nothing is impossible” and hopes this project will enhance the Newborn Screening Program, leading to better testing practices and ensuring no child is missed. |
 | Tameka Sama, a long-time team member of CHiR, recently connected CHiR’s prior work with the Pacific Sickle Cell Regional Consortium to this SCDC project. Sama emphasizes the importance of neutral, accurate data, stating, “the data doesn’t lie.” She believes this project will be a significant step in identifying and solving critical issues faced by sickle cell patients in Arizona. By linking various organizations and resources, the project aims to address statewide issues and bring effective solutions to patients. |
 | Dr. Danielle Nance, a hematologist with Banner Health specializing in non-cancerous blood diseases, highlights the common struggles with pain, fatigue and the need for better understanding among sickle cell patients and those with other blood disorders. She emphasizes the additional burden due to misconceptions and lack of education among healthcare providers and the public. Dr. Nance advocates for improved education to empower patients and healthcare professionals, aiming to bridge the gap in understanding and reduce barriers to care and pain management for sickle cell patients. As she aptly puts it, “education and knowledge are key.” |
Community Involvement
Our community partners play a vital role in this project, representing the sickle cell population in Arizona. They will share their personal experiences and expertise to help identify areas needing better and expanded services. Their involvement will also put a personal face in front of policymakers, crucial during discussions on the challenges faced by sickle cell patients.
Looking Ahead
As we move forward, we will reach out to the sickle cell community, inviting them to share their stories, challenges, triumphs and hopes for the future. This collaborative effort aims to create a more informed and supportive environment for all those affected by sickle cell disease in Arizona.
More updates will be shared as we embark on this important journey to improve the lives of sickle cell patients through research, advocacy and community collaboration.