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The Barbados Lupus and Rheumatology Registry

Project investigators:

Cindy Flower (CDRC), Ian R Hambleton (CDRC), Kim Quimby (CDRC), and Anselm JM Hennis (CDRC)

Funding and collaborators

The pilot study to the BLR, the Barbados Lupus Study, was funded by a grant from the Alliance for Lupus Research, New York, USA.

The Barbados Lupus Group:

  • Chronic Disease Research Centre and School of Clinical Medicine & Research, Barbados: Cindy Flower, Ian Hambleton, Celia Greaves, Wendy Browne, George Nicholson, Emile Mohamed, Anselm Hennis

     

  • Harvard Medical School, USA: Matthew Liang
  • University of Alabama, USA: Robert Kimberley
  • National Institute for Environmental Health Sciences, USA: Christine Parks

Background and Aims:

Systemic lupus erythematosus (SLE) is frequent and clinically aggressive in westernized African-descent women. The Barbados Lupus and Rheumatology Registry (BLR), established in collaboration with Harvard University and the NIEHS, aims initially to identify all cases of SLE in order to describe rates, clinical syndromes and outcomes in Barbados.

Methodology:

The pilot for this registry began with a review of 111 SLE patients between 1995 and 2005 in order to paint the picture of SLE in Barbados. The BLR followed, with case ascertainment conducted through patient record review (private and public hospital) and including all clinical cases diagnosed from 1 January 2000 onwards. Clinical data were abstracted along with patient examination and laboratory testing.

Progress update/Results:

Up to 31 December 2007, there were 153 incident SLE cases registered, of whom 146 were females (sex ratio 20:1). The annual crude incidence rate per 100,000 population was 13.1 (95% CI 11.0–15.4) for women and 0.7 (95% CI 0.3–1.4) for men (7.1 overall; 95% CI 6.0–8.3). Age-specific incidence in women was found to be highest in those aged 20-49 years. Registration of cases and serological studies are ongoing.

Impact/expected impact:

This national registry describes the incidence, clinical features and complications of lupus in Barbados. The BLR was a prototype for the current national surveillance system for chronic disease in Barbados, the BNR, and pioneered the use of modular-style add-on research projects to a national surveillance system.

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