The African Lupus Genetics Network (ALUGEN) registry: standardized, prospective follow-up studies in African patients with systemic lupus erythematosus

• Published in: Lupus 2016-03, Vol.25 (3), p.325-330
• Main Authors: Hodkinson, B, Mapiye, D, Jayne, D, Kalla, A, Tiffin, N, Okpechi, I
• Format: Article
• Language: English
• Subjects: Africa - epidemiology; African Continental Ancestry Group - genetics; Databases, Genetic; Follow-Up Studies; Genetic Predisposition to Disease; Genetics; Humans; Lupus; Lupus Erythematosus, Systemic - diagnosis; Lupus Erythematosus, Systemic - ethnology; Lupus Erythematosus, Systemic - genetics; Lupus Erythematosus, Systemic - therapy; Phenotype; Prevalence; Prognosis; Prospective Studies; Quality of life; Registries; Research Design; Risk Factors; Severity of Illness Index; Time Factors
• ISSN: 0961-2033; 1477-0962
• DOI: 10.1177/0961203315606984

Background The prevalence and severity of systemic lupus erythematosus (SLE) differs between ethnic groups and geographical regions. Although initially reported as rare, there is growing evidence that SLE is prevalent and runs a severe course in Africa. There is a paucity of prospective studies on African SLE patients. Objective The African Lupus Genetics Network (ALUGEN) is a multicentred framework seeking to prospectively assess outcomes in SLE patients in Africa. Outcomes measured will be death, hospital admission, disease activity flares, and SLE-related damage. We will explore predictors for these outcomes including clinical, serological, socio-demographic, therapeutic and genetic factors. Further, we will investigate comorbidities and health-related quality of life amongst these patients. Methods Data of patients recently (≤5 yrs) diagnosed with SLE will be collected at baseline and annual follow-up visits, and captured electronically. The ALUGEN project will facilitate standardized data capture for SLE cases in Africa, allowing participating centres to develop their own SLE registries, and enabling collaboration to enrich our understanding of inter-ethnic and regional variations in disease expression. Conclusion Comprehensive, high-quality multi-ethnic data on African SLE patients will expand knowledge of the disease and inform clinical practice, in addition to augmenting research capacity and networking links and providing a platform for future biomarker and interventional studies.