title: The African Lupus Genetics Network (ALUGEN) registry: standardized, prospective follow-up studies in African patients with systemic lupus erythematosus.
abstract: 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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Medicine, Groote Schuur Hospital and University of Cape Town, Cape Town, South Africa Division of Rheumatology, Chris Hani Baragwanath Academic Hospital, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa drbridget@gmail.com.
authors.forename: B
authors.initials: B
authors.lastname: Hodkinson
authors.affiliation: The South African National Bioinformatics Institute/Medical Research Council of South Africa Bioinformatics Unit, University of the Western Cape, Belville, South Africa.
authors.forename: D
authors.initials: D
authors.lastname: Mapiye
authors.affiliation: Department of Medicine, University of Cambridge, School of Clinical Medicine, Cambridge, UK.
authors.forename: D
authors.initials: D
authors.lastname: Jayne
authors.affiliation: Department of Medicine, Groote Schuur Hospital and University of Cape Town, Cape Town, South Africa.
authors.forename: A
authors.initials: A
authors.lastname: Kalla
authors.affiliation: The South African National Bioinformatics Institute/Medical Research Council of South Africa Bioinformatics Unit, University of the Western Cape, Belville, South Africa.
authors.forename: N
authors.initials: N
authors.lastname: Tiffin
authors.affiliation: Department of Medicine, Groote Schuur Hospital and University of Cape Town, Cape Town, South Africa.
authors.forename: I
authors.initials: I
authors.lastname: Okpechi
mesh_terms: D000349:Africa / Q000453:epidemiology; D044383:Black People / Q000235:genetics*; D030541:Databases, Genetic; D005500:Follow-Up Studies; D020022:Genetic Predisposition to Disease; D006801:Humans; D008180:Lupus Erythematosus, Systemic / Q000175:diagnosis / Q000208:ethnology* / Q000235:genetics* / Q000628:therapy; D010641:Phenotype; D015995:Prevalence; D011379:Prognosis; D011446:Prospective Studies; D012042:Registries; D012107:Research Design; D012307:Risk Factors; D012720:Severity of Illness Index; D013997:Time Factors
keywords: Africa; outcomes; registry; systemic lupus erythematosus