CAREST—Multilingual Regional Integration for Health Promotion and Research on Sickle Cell Disease and Thalassemia

Abstract

Sickle cell disease (SCD) is a significant problem in the Caribbean, where many individuals have African and Asian forebears. However, reliable prevalence data and specific health care programs for SCD are often missing in this region. Closer collaboration between Caribbean territories initiated in 2006 to set up strategies to promote better equity in the health care system for SCD patients led to the formation of CAREST: the Caribbean Network of Researchers on Sickle Cell Disease and Thalassemia. We present the effectiveness of collaborations established by CAREST to promote SCD newborn screening programs and early childhood care, to facilitate health worker training and approaches for prevention and treatment of SCD complications, and to carry out inter-Caribbean research studies.

Newborn Screening for Sickle Cell Disease in the Caribbean: An Update of the Present Situation and of the Disease Prevalence

“…Given the SCD prevalence and the demonstration of the benefit of the NBS program, one might have expected that SCD NBS would be entrenched across the Region. This is clearly not the case and our data suggest several factors which may be at play, with the availability of resources being a major issue [5,6,9].…”

“…Table 2 summarizes the main results of the hemoglobinopathy NBS programs performed in the French territories [ 6 ], Jamaica [ 5 ], Grenada [ 13 ], Tobago [ 9 ], and Saint Lucia [ 10 ].…”

“…Allele frequencies were estimated by gene-counting and the prevalence of SCD was calculated from the newborn screening results. Table 2 summarizes the main results of the hemoglobinopathy NBS programs performed in the French territories [6], Jamaica [5], Grenada [13], Tobago [9], and Saint Lucia [10]. The current coverage of the NBS programs is as follows: Guadeloupe (>98%), Martinique (>99%), Jamaica (>98%), and Tobago (96%).…”

“…These data were provided from NBS programs implemented in Jamaica [5] and in the French territories [6], as well as from a prenatal diagnosis program in Cuba [7,8]. Collaboration between medical and scientific Caribbean teams began to increase in 2006, leading to the founding in 2011 of the Caribbean Network of Researchers on Sickle Cell Disease and Thalassemia (CAREST) as a not-for-profit organization [9]. Promotion of NBS for the hemoglobinopathies and assistance for the establishment of sickle cell centers were the primary goals of CAREST.…”

Newborn Screening for Sickle Cell Disease in St. Vincent and the Grenadines: Results of a Pilot Newborn Screening Program

“…In Guadeloupe, the incidence of SCD is 1:304 newborns, and the rate is 1:150 newborns in Jamaica. 6 - 8 Despite the higher burden of disease in the Caribbean, most countries in this region do not have newborn screening programs for SCD. Jamaica introduced limited newborn screening in 1995.…”