Publications
1. Empowering Vision: The Sickle Cell Retinopathy Network's Mission to Transform Care and Research (ASCAT 25-28 October 2023)
This presentation will introduce the core values of SCR.net. Our vision is clear: to reduce vision-threatening complications across all sickle cell genotypes through global collaboration and robust multicentre research. We outline the goals of SCR.net, including comprehensive education for healthcare professionals and patients, advocacy for improved ophthalmic care on a global scale and influential contributions to healthcare policy in both middle-income and low-income countries. Ultimately, our aspiration is for SCR.net to revolutionise SCR management and alleviate its impact on affected populations worldwide.
2. Investigating Publication Trends in Sickle Cell Retinopathy Over the Last 60 Years (ASCAT 25-28 October 2023)
This study takes a deep dive into publication trends related to SCR over the past six decades. It reveals a significant research imbalance, with the United States leading in contributions, followed by European Union countries and the United Kingdom, while African and Caribbean nations lag behind. International collaboration, particularly between high-income countries and those in West Africa and the Caribbean, is limited. The findings highlight the need for enhanced collaboration to improve the global understanding of SCR, particularly in regions with substantial disease burdens.
3. The Readability and Quality of Online Information on Sickle Cell Retinopathy for Patients (ASCAT 25-28 October 2023)
Within this study, we scrutinise the quality and readability of online health information concerning SCR for patients. Our research employs various evaluation tools and uncovers that while some online sources score moderately in quality, there is a scarcity of comprehensive content addressing this condition. Furthermore, the available information frequently falls short of recommended readability levels. These findings highlight the need for improved online resources to better educate patients about SCR, thereby bringing knowledge and empowerment to those who need it most.