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.
Introduction
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 SCR.net 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 SCR.net for short. This initiative marks a pivotal moment in the SCR landscape, aiming to shift the status quo in research and clinical care. SCR.net 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. SCR.net 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 SCR.net at the ASCAT Conference
SCR.net’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.
- Empowering Vision: The Sickle Cell Retinopathy Network’s Mission to Transform Care and Research
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.
- 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.
- 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 SCR.net 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, SCR.net is poised to transform the landscape of SCR management. While we embark on this transformative path, allow me to introduce the inaugural members of SCR.net, 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!
SCR.net 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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