Background
Persons with albinism (PWA) in sub-Saharan Africa experience disproportionately high rates of non-melanoma skin cancer (NMSC), driven by high ultraviolet (UV) radiation exposure, limited access to photoprotection resources, limited healthcare access, and pervasive social and economic marginalisation. Despite this substantial burden, there is a critical lack of high-quality epidemiological evidence on incidence, risk factors, aetiology, clinical outcomes, and policy responses related to skin cancer among PWA in Africa. Addressing these gaps is essential for informing prevention strategies, improving early detection, and strengthening policy responses across the cancer care continuum.
 
Objectives
This research programme aims to generate robust evidence to inform skin cancer prevention and control among PWA in Africa. Specific objectives are to:
(1) assess how national cancer control policies and related policies address skin cancer in PWA across the cancer continuum of care.
(2) update incidence and mortality estimates of NMSC in PWA by age, sex, and geography.
(3) identify sociodemographic, clinical, and photoprotective risk profiles associated with increased skin cancer risk.
(4) examine the relationship between UV exposure and NMSC incidence.
(5) evaluate the effectiveness of photoprotective behaviours and educational interventions in reducing UV exposure.
 
Methods
A multi-component, mixed-methods research programme is being implemented. Policy analyses involve desk-based reviews of national cancer control plans, and related national action in Africa, using Walt and Gilson’s policy triangle framework. Epidemiological components include secondary analyses of existing datasets in Tanzania and Malawi to update NMSC incidence rates and assess risk factors. A prospective observational UV exposure study employs a before-and-after design using UV dosimeters to quantify UV dose and assess changes following educational interventions on sun protection. Additional collaborative studies include registry linkage analyses, and verbal autopsy studies. Ethical approvals are ongoing across study components.
 
Results
The programme is currently ongoing under different work packages. The policy review is underway following an inaugural collaborators meeting, with early indications of limited and inconsistent consideration of PWA-specific skin cancer needs within national policy frameworks. Protocols for epidemiological analyses have been developed and ethics processes initiated. UV dosimeters have been procured for the exposure study, with field implementation planned. Multiple regional collaborations have been established to support registry linkage, epidemiological studies, and data collection across settings.
 
Conclusions / Implications
This integrated research programme aims to addresses the critical evidence gaps on skin cancer among PWA in Africa by combining policy analysis, epidemiological analyses, and exposure science. Findings are expected to inform targeted prevention strategies, strengthen photoprotection guidance, and support the integration of PWA-specific considerations into national cancer control policies.
 
LMIC involvement
The research is being developed and implemented through partnerships with collaborators, including researchers, advocacy organisations, and clinical experts across multiple African countries. Local partners contribute to study design, data access, field implementation, and interpretation of findings, ensuring contextual relevance and ownership. A research network of interested experts has also been launched to strengthen regional collaboration on this topic.