Advancing research on UK Sickle Cell Epidemiology; reflections on my internship with the Observatory

As Sickle Cell Awareness Month ends and Black History Month begins, the opportunity to celebrate Black excellence, achievement and contribution, must be acknowledged with confronting the inequalities that continue to shape people’s lives. For me, that means recognising the expertise, leadership and lived experience within Black communities and ensuring these perspectives help shape the future of health research. Sickle cell disease is an especially important part of that conversation.

My placement with the Observatory will coincide with my PhD at University College London (UCL) over the next four years. I am working with the independent health body to address inequalities in transition care in sickle cell disease (SCD) using data-driven approaches. My work builds on Dr Rutendo Muzambi’s important comparative research on SCD, supported by the Observatory.

My doctoral research is supported through a competitive joint bid by UCL and the Observatory for a Medical Research Council Fellowship. Working with the Observatory will give me valuable insight into how research can inform policy and practice, helping to ensure that my own work has meaningful, real-world impact.

Sickle cell disease

SCD is an inherited genetic blood disorder of the cell structure that disproportionately affects people of African and Caribbean heritage. It is one of the most prevalent genetic conditions in England, with around 300 babies born with the condition each year. Yet SCD remains under-researched compared with conditions such as cystic fibrosis, which historically received approximately 4 times more research funding per patient and supported substantially more clinical trials and publications (Muzambi et al., 2025).

Children and young people with SCD can face painful crises, stroke, silent cerebral infarction, severe anaemia and an increased risk of infection. A sickle cell crisis happens when sickled red blood cells block blood flow, causing pain and tissue damage. These complications can affect not only their health, but also their education and wider life course. Although the pathophysiology of SCD is well understood, there is still limited evidence about its broader, long-term impact.

Studying health education across the life course

My doctoral research aims to understand the life course epidemiology of children and young people with SCD and how the condition affects their long-term health and educational outcomes. I will examine healthcare use and outcomes and compare these with other conditions that also involve chronic symptoms such as cystic fibrosis.

By focusing on communities that have been underserved by research and clinical services, I hope the work will generate evidence that supports more equitable policy.

Using ECHILD, a linked dataset of health and education records in England, I aim to build a fuller picture of how SCD shapes young people’s experiences over time. The goal is not simply to describe inequality, but to produce findings that can translate into actionable improvements in clinical practice, educational provision and policy.

Partnering for meaningful change

Collaboration with the Observatory creates a unique opportunity to draw together expertise in research, policy and clinical practice with the knowledge of the sickle cell community. This partnership will help me address one of the most difficult parts of research: turning evidence into timely, practical change.

Meaningful public and patient partnership will be central to the project. The Observatory’s trusted relationships with sickle cell stakeholders will help ensure that lived experience is valued alongside scientific evidence when research questions, interventions and policy recommendations are shaped. In my first few months, I have already benefited from engagement with clinicians, patient representatives and national leaders, as well as support from my PhD supervisor, my Observatory mentor Dr Carl Reynolds and the wider team.

Improving diagnostic equity

Alongside my doctoral work, I plan to develop a discrete research project exploring diagnostic inequity among children with SCD in England. Diagnostic inequity refers to systematic differences in diagnostic accuracy or timeliness that are related to patients’ social identities. SCD is a particularly relevant case because it affects Black communities and is clinically complex, making it vulnerable to biased assumptions, premature diagnostic closure and unequal levels of clinical vigilance.

Through this work, I hope to produce actionable evidence and recommendations that can contribute to a future national agenda for improving diagnostic equity for SCD patients. Addressing these differences is essential if every child is to receive the timely attention and quality of care they need.

There is still much to do in SCD research and a long way to go in addressing unacceptable health inequalities for people living with the condition. Black History Month reminds us that progress depends on recognising Black excellence, listening to communities and creating the conditions in which knowledge can lead to change.

I am grateful to be embarking on this journey and convinced that our understanding of SCD’s impact on individuals and communities must continue to deepen. By combining data science, epidemiology, clinical research, policy expertise and lived experience, I hope my work will make a meaningful contribution to improving outcomes for children, young people and families affected by sickle cell disease.