The Sickle Cell Retinopathy Network – Transforming Care and Research

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.  


Within this complex disorder lies an often overlooked complication – sickle cell retinopathy (SCR), which profoundly affects the vision of individuals in their working years, particularly when proliferative sickle cell retinopathy (PSR) develops. Astonishingly, the only randomised clinical trials addressing therapeutic options for PSR date back more than 50 years ago, with a void in recent research efforts. This blog delves into the undeniable scarcity of research and clinical trials concerning SCR and examines a potential solution to rectify this issue.

Historical Context

Historically, exploring treatment options for PSR has been sparse, with the only randomised clinical trials occurring in Jamaica during the 1970s and 1980s. Regrettably, there have been no recent developments and furthermore there is lack of knowledge pertaining to screening methods, modality and interval. What’s even more concerning is the noticeable dearth of research and clinical trials about SCR in general, especially when compared with other retinovascular diseases that pose similar threats to vision. This glaring discrepancy can be attributed to several factors, including race, funding, geography and more complex intersectional reasons.

The Birth of as a New Paradigm of Collaboration

The time has come to change this narrative! We are excited to introduce you to the revolutionary Sickle Cell Retinopathy Network, known as for short. This initiative marks a pivotal moment in the SCR landscape, aiming to shift the status quo in research and clinical care. is a global network comprising multidisciplinary teams from countries and populations where SCD is prevalent. Often, clinical trials and research in medicine are dominated by countries in the global north, overlooking the expertise and experiences of countries in the global south. is set to break this cycle recognising the importance of leadership from countries in the global south while welcoming equal participation from countries in the global north. This collaborative effort aims to bridge the research and knowledge gap surrounding SCR by drawing on the wisdom and insight of our colleagues in the global south. After all, it was in these regions that SCD was first described, and where the initial clinical trials took place.

Unveiling at the ASCAT Conference’s official launch will be at the annual Academy for Sickle Cell and Thalassaemia (ASCAT) conference, that will be held from 25th to 28th October 2023 in London. We are delighted to announce that all three of our following submitted abstracts will be presented.

  1. Empowering Vision: The Sickle Cell Retinopathy Network’s Mission to Transform Care and Research

This presentation will introduce the core values of 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, 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 to revolutionise SCR management and alleviate its impact on affected populations worldwide.

  1. Investigating Publication Trends in Sickle Cell Retinopathy Over the Last 60 Years

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.

  1. The Readability and Quality of Online Information on Sickle Cell Retinopathy for Patients

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.

The establishment of the and the valuable insights that will arise from our presentations and discussions represent a significant step toward addressing the challenges surrounding SCR. Through international collaboration and a revitalised dedication to research, is poised to transform the landscape of SCR management. While we embark on this transformative path, allow me to introduce the inaugural members of, a community I am honoured and privileged to be a part of. We welcome others to join us. In the meantime, please stay tuned for more updates! founding members

Names Affiliation Institutions
Adetunji Adenekan Consultant Ophthalmologist and Senior Lecturer Lagos University Teaching Hospital and College of Medicine University of Lagos, Nigeria
Akwasi Ahmed Consultant Ophthalmologist Komfo Anokye Teaching Hospital, Ghana
Kwesi Nyan Amissah-Arthur Consultant Ophthalmologist and Senior Lecturer Korle Bu Teaching Hospital and University of Ghana School of Medicine and Dentistry, Ghana
Winfried M. K. Amoaku Associate Professor & Reader and Honorary Consultant Ophthalmologist University of Nottingham and Nottingham University Hospitals Trust, UK 
Rabia Bourkiza Consultant Ophthalmologist London North West University Healthcare NHS Trust, UK
Mohammed-Sherrif Fuseini Medical Doctor Korle Bu Teaching Hospital and University of Ghana School of Medicine and Dentistry, Ghana
Zulfiya Emefa Gbedemah Medical Doctor Korle Bu Teaching Hospital and University of Ghana School of Medicine and Dentistry, Ghana
Evelyn Mensah Consultant Ophthalmologist London North West University Healthcare NHS Trust, UK
Lizette Mowatt Consultant Ophthalmologist and Professor of Ophthalmology University of the West Indies and the University Hospital of the West Indies, Kingston, Jamaica
Nnenna Osuji Consultant Haematologist and Chief Executive Officer North Middlesex University Hospital NHS Trust, UK
Sobha Sivaprasad Consultant Ophthalmologist and Professor in Ophthalmology Moorfields Eye Hospital NHS Foundation Trust and Moorfields NIHR Clinical Research Facility, UK 


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Onwubalili J, Sickle-cell anaemia: an explanation for the ancient myth of reincarnation in Nigeria. Lancet. 1983;322:503–5.

Amissah-Arthur KN, Mensah E. The past, present and future management of sickle cell retinopathy within an African context. Eye (Lond). 2018;32(8):1304-1314

Jampol LM, Condon P, Farber M, Rabb M, Ford S, Serjeant G. A randomized clinical trial of feeder vessel photocoagulation of proliferative sickle cell retinopathy. I. Preliminary results. Ophthalmology 1983;90:540-5.

Farber MD, Jampol LM, Fox P, et al. A randomized clinical trial of scatter photocoagulation of proliferative sickle cell retinopathy.  Arch Ophthalmol 1991; 109: 363–367