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.

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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.

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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.  

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Sickle cell disorder (SCD) is deeply intertwined with the history and culture of various regions in Africa, particularly West Africa, where its initial descriptions bore cultural and spiritual significance.
 

Sickle cell trait (SCT) has traditionally been considered benign.  However, emerging evidence suggests that SCT may contribute to vascular complications, particularly when coexisting with type 2 diabetes mellitus (T2DM). Proliferative diabetic retinopathy (PDR) primarily affects the posterior pole (Shimizu et al, 1981). In contrast, proliferative sickle retinopathy

(PSR) involves a staged progression of peripheral vascular changes, including peripheral neovascularisation. The interaction between SCT and T2DM in retinal vascular disease remains underexplored.

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The Sickle Cell Retinopathy Symposium, hosted by SCR.net, brought together international experts to discuss the past, present, and future of sickle cell disease and its retinal complications. The session explored global and historical perspectives, clinical features, advances in multimodal imaging, and current treatment approaches—culminating in a discussion on future directions and collaboration through SCR.net.

Speakers:

Professor Lizette Mowatt (Chair)Ms. Evelyn MensahDr. Basil WilliamsDr. Mohammed-Sherrif Fuseini

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This poster was presented by the Sickle Cell Retinopathy Network (SCR.net) at the ASCAT 2025 conference.

It showcases our ongoing work towards developing consensus guidelines for sickle cell retinopathy (SCR), a potentially blinding but under-recognised complication of sickle cell disease. By building global consensus, especially with expertise from regions where sickle cell is most prevalent, we aim to reduce the burden of preventable blindness from SCR.

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Background

Retinal vascular diseases pose significant challenges to ensuring global ocular health with consequent negative impacts on the well-being of individuals worldwide. This study explores the divergent research landscapes of Sickle Cell Retinopathy (SCR) and Diabetic Retinopathy (DR), two of the most common retinal vascular diseases, by comparing publication trends and assessing the relative research output on these two diseases across different countries.

Methods

A comprehensive search of PubMed and Scopus databases was conducted to collect relevant publications. Annual publication trends of various countries were analysed, along with the extent of international collaboration in DR and SCR research. Additionally, the distribution of declared funding sources, types of documents, and publication languages was examined.

Results

DR garnered substantially more publications (69,761) compared with SCR (1059). Notably, research efforts on both diseases were spearheaded by high-income countries, particularly the United States (US), European Union (EU) Member countries, and the United Kingdom. Conversely, African and Caribbean nations exhibited lower contributions to SCR research. International collaborations were more prevalent in DR research, which also received more declared funding sources compared to SCR. Furthermore, DR research was disseminated across a wider array of journals than SCR research. Research articles and reviews constituted the primary document types for both diseases, with English being the predominant language of the publications.

Conclusions

There are significant disparities in published research landscapes between SCR and DR, with the latter receiving far more attention. High-income countries, particularly the US and EU member countries, have played a pivotal role in driving research efforts for both conditions, while contributions from middle and low-income countries remain limited.

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Sickle cell retinopathy remains one of the most overlooked causes of vision loss worldwide, despite its devastating impact on young and working-age adults. The Sickle Cell Retinopathy Network (SCR.net) is changing that narrative, uniting experts from across continents to close the gap in research, screening, and care. Through global collaboration and equitable leadership, the network is building consensus on how, when, and whom to screen and treat. Discover how this initiative is reshaping the future of eye health in sickle cell disease.

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