CAREST is the acronym for Caribbean Association for Researchers in Sickle Cell Disease and Thalassemia.

Steering committee

Guadeloupe (CIC-EC Antilles-Guiane (Inserm/UAG, CHU de Pointe-à-Pitre)

Martinique (CH Lamentin)

Trinidad & Tobago (UWI-St Augustine)

Jamaica (Sickle Cell Unit Kingston)

Dominican Republic

Haiti

Cuba  (Instituto de Hematología e Inmunología, Havana)

INTRODUCTION

In 1910 the first case of Sickle Cell Disease was reported in the western medical literature by James Herrick. In that report he described Sickle Cell Disease in a Grenadian Dental Student.

Countries in the region share a common ancestral heritage resulting in the presence of genes coding for abnormal haemoglobins being present with significant frequencies. The United Nations (UN) has recognized the public health burden of sickle cell and has declared JUNE 19TH, as the “World Day of Sickle Cell Disease”.

Neonatal Screening has emerged as one of the most cost-effective public health strategy to address the public health burden of Sickle Cell Disease in areas with high prevalence of the Sickle Cell gene. The institution of successful national neonatal screening programmes requires a comprehensive health policy, that apportions adequate financial, human and laboratory resources, and health service systems that facilitates a multidisciplinary approach to health promotion, education and management for children and adults with sickle cell disease.

A network of researchers and clinicians, supported by the CIC-EC 802 French Caribbean-French Guyana and the Sickle Cell Unit, TMRI  Jamaica, has been recently established  with the aim of assisting Caribbean countries to respond to the public health burden of Sickle Cell Disease  through the provision of technical advice, epidemiological data and coordination of research on health priorities.

Some key dates

-1910: 1st western report of a case of sickle cell disease in a Grenadian Man

-1997: 1st Meeting inter-Caribbean of  associations of patients with sickle cell disease COSCA (Caribbean Association of Sickle Cell Disease associations)

-2006: – 1st Sickle Cell Disease Conference of Caribbean researchers and clinicians: 11 Caribbean islands (Bahamas, Barbados, Cuba, Dominica, Guadeloupe, French Guyana, Haïti, Jamaica, Martinique, Dominican Republic, Trinidad) – Resolution taken : To set up a Steering Committee  of  Caribbean network of sickle cell disease (CAREST : Caribbean Network of Researchers on Sickle Cell Disease and Thalassemia).

-2007: First meeting in Guadeloupe of the CAREST Steering committee: (Guadeloupe, Jamaica, Martinique, Trinidad).   CAREST coordination awarded to Guadeloupe

–2008: UN recognizes sickle cell disease as a public health problem

-2009: CAREST presentation at the meeting of PAHO in Brasil by Marvin REID (Jamaica)

-2009 : Entry of Cuba to CAREST

-2010 : Thalassemia added to portfolio

CAREST OBJECTIVES

• Promote Sickle Cell Disease and Thalassemia as public health concerns in the region.
• Provide epidemiological and other health data  on Sickle Cell Disease and Thalassemia for policymakers.
• Improve the quality of care offered to persons and their families affected with Sickle Cell Disease and Thalassemia by the creation of clinical protocols or standard of care guidelines appropriate to the level of development within each territory.
• Provide the framework for collaborative research on research priorities in Sickle Cell Disease and Thalassemia within the region.
• Act as a technical resource for families, non-governmental organizations NGOs and governments in the region on Sickle Cell Disease and Thalassemia.

CAREST Executive board

Marie-Dominique Hardi-Dessources, President (Guadaloupe)

Marvin Reid, Vicepresident (JAMAICA)

Rinaldo Villaescusa-Blanco, Vicepresident (CUBA)

Gisele Elana, Secretary (MARTINICA)

Lisiane Keclar Christopher, Treasurer (GUADALOUPE)

Members:

Laurence Boutin (HAITI)

Narcise Elanga (FRENCH GUIANA)

Maryse Etienne-Julan (GUADALOUPE)

Altheia Jones-Lecointe (TRINIDAD & TOBAGO)

Jennifer Knight-Madden (JAMAICA)

Rosa M. Nieves Paulino (DOMINICAN REPUBLIC)

Christian Saint-Martin (GUADALOUPE)

Gillian Wheeler (TRINIDAD & TOBAGO).