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Network Working Group

Newborn Screening Working Group

This working group brings together representatives from 11 Caribbean territories to strengthen regional collaboration around newborn screening. Against a backdrop of widely varying screening situations across territories, members share their experiences and discuss the different screening options available, with a view to supporting the development and improvement of newborn screening programmes throughout the region.

Working Group Lead

Jennifer KNIGHT-MADDEN (Jamaica)
Pediatrician, Vice-President of CAREST

  • Edda Hadded (Antigua & Barbuda) - Pediatrician – Neonatologist
  • Shivon Belle Jarvis (Antigua & Barbuda) – Pediatrician
  • Rockel Romero (Belize) – Parent / Advocate
  • Clarissa Hamilton (Dominica) – Pediatrician
  • Kellyn George (Dominica) – CAREST Secretary
  • Jozan Brathwaite (Grenada) – Pediatrician
  • Lydia Doumdo (Guadeloupe) – Pediatrician
  • Ketty Lee (Guadeloupe) – Medical Biologist
  • Leslie Lori (Guadeloupe) – Biologist, Head of the University Hospital Laboratory
  • Yann Lamarre (Guadeloupe) – Biologist
  • Marie-Dominique Hardy-Dessources (Guadeloupe) – President of CAREST
  • Sherelyn Stanton (Guyana) – Pediatrician
  • Winsome Scott (Guyana) – Pediatrician – Neonatologist
  • Emmeline Lerebours (Haiti) - Pediatrician
  • Jamesly Joseph (Haiti) – Pediatrician
  • Laurence Noisette (Haiti) – Pediatrician / Hematologist / Oncologist
  • Jennifer Knight-Madden (Jamaica) – Pediatrician
  • Rosa Diaz (Puerto Rico) – Pediatrician
  • Lashorn Christian (Saint Lucia) – Pediatrician
  • Ngozi Keshi (Trinidad & Tobago) – Pediatrician

Communication Working Group

This working group aims to promote the actions carried out by Caribbean territories in the fight against sickle cell disease. Whether at conferences, on World Sickle Cell Disease Day, or at other events, communication is essential — both to help make each event a success on the day itself, and to ensure its impact beyond. We therefore share information on this website, as well as on our Instagram, LinkedIn and YouTube accounts.

Working Group Lead

Yohann GARNIER (Guadeloupe)
Associate Professor

  • Marie-Dominique Hardy-Dessources (Guadeloupe) – President of CAREST
  • Yann Lamarre (Guadeloupe) – Treasurer

The Objectives of the CAREST Network

  • To improve the quality of care provided to patients living with sickle cell disease and thalassaemia, as well as to their families, through the development of clinical protocols or recommendations appropriate to the level of development of each territory;
  • To support the training of healthcare professionals for the optimal management of patients;
  • To support the implementation of newborn screening in countries and territories where it is needed;

  • To facilitate collaborations for the development of research programmes addressing priorities in sickle cell disease and thalassaemia in the Caribbean;
  • To provide decision-makers with epidemiological data and information on the management of, and research into, sickle cell disease and thalassaemia in the Caribbean;
  • To promote the recognition of sickle cell disease and thalassaemia as public health priorities in the Caribbean region.

The CAREST network (Caribbean Network of Researchers on Sickle Cell Disease and Thalassemia) is a Caribbean network bringing together researchers and clinicians committed to combating sickle cell disease and thalassaemia.

Across the Caribbean, the prevalence of the βS gene responsible for sickle cell disease is high, making sickle cell disease the most common genetic disease in the region and a major public health concern.

A high prevalence of the genes responsible for thalassaemia is also found across the region, particularly in countries with a population of significant Asian descent.

The haemoglobin abnormality caused by the presence of the βS gene, which characterises sickle cell disease, triggers under certain conditions:

  • the deformation,
  • the rigidification of red blood cells,
  • and the abnormal adhesion of red blood cells to vessel walls.

The consequences are multiple: obstruction of the microvasculature (vaso-occlusion), premature destruction of red blood cells (haemolysis), and the onset of acute and chronic complications such as painful crises, anaemia, infections, strokes, priapism, leg ulcers, and pulmonary complications.
Thalassaemia is characterised by the absence or reduced synthesis of haemoglobin chains; the resulting symptoms are variable, with severe forms accompanied by anaemia and developmental disorders.

In response to the heterogeneity in the management of these conditions across the Caribbean, specialists in sickle cell disease from 11 Caribbean countries and territories (Bahamas, Barbados, Cuba, Dominica, Guadeloupe, French Guiana, Haiti, Jamaica, Martinique, Dominican Republic, Trinidad and Tobago), who met in Guadeloupe in 2006, deemed it necessary to establish collaborations to harmonise management practices and ensure that patients across the Caribbean have access to the essential therapeutic options available.

The CAREST network, established on the basis of these objectives, holds legal recognition as an Association governed by the French law of 1 July 1901 and the decree of 16 August 1901.

WOULD YOU LIKE TO BECOME A MEMBER OF THE CAREST NETWORK?

Any professional working in the field of public health, clinical care or research, residing (or not) in a Caribbean country or territory, and who demonstrates an interest in sickle cell disease and/or thalassaemia, may become a member of CAREST, subject to validation of their membership by the Board of Directors.

Members are required to pay an annual membership fee and are invited to participate in a General Assembly (GA) meeting at least once a year. The CAREST Board of Directors proposes a basic membership fee of USD 25 for English-speaking members and EUR 25 for French-speaking members.

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Dre Marie-Dominique HARDY-DESSOURCES, PhD
Martinique - Guadeloupe

Dr Marie-Dominique Hardy-Dessources is a biochemist and former Inserm research scientist, where she worked from 1987 until her retirement in 2022. She has been dedicated to sickle cell disease research since her doctoral thesis in pharmaceutical sciences, conducted at Inserm (Créteil) and defended at Paris-Sud University.
She later continued her career in Guadeloupe, where she contributed, alongside Dr Guy Mérault, to the establishment of the first French centre dedicated to the comprehensive care of sickle cell disease. Her research activities, carried out within Inserm and in collaboration with French and Caribbean universities, encompassed both experimental and translational research. Her work focused primarily on the biological mechanisms involved in vaso-occlusive crises and disease severity, including rheological abnormalities as well as inflammatory and oxidative processes.
Author of more than one hundred and thirty scientific publications, Dr Hardy-Dessources is also a founding member of CAREST (Caribbean Network of Researchers on Sickle Cell Disease and Thalassaemia), where she has served as Chair of the Board since the network’s establishment in 2012.

Beatriz MARCHECO-TERUEL, MD, PhD - Cuba

Beatriz Marcheco-Teruel, MD, PhD, is a clinical geneticist and professor at the Medical University of Havana in Cuba. Since 2005, she has served as Director of the National Medical Genetics Centre, where she is also a Senior Research Scientist.
Recognised internationally as a leader in human and community genetics, she has played a pivotal role in advancing national programmes in clinical genetics, public health genomics and precision medicine in Cuba. She previously directed the WHO Collaborating Centre for the Development of Genetic Approaches for Health Promotion, and she currently leads the National Advisory Group for Clinical Genetics within the Cuban Ministry of Public Health. Professor Marcheco-Teruel is president of the Cuban Society of Human Genetics and vice-president of the Cuban Academy of Sciences and CAREST (the Caribbean Network of Researchers on Sickle Cell Disease and Thalassaemia). Her work focuses on human and community genetics and personalised medicine. She has authored over 130 scientific publications (Google Scholar h-index: 25) and supervised numerous graduate theses. She has also received multiple national and international honours, including the Carlos J. Finlay Medal and the Sofia Kovalevskaya International Award.

Jennifer KNIGHT-MADDEN, MB BS, FRCP-C, PhD - Jamaica

Professor Jennifer Knight-Madden is a senior academic at the Sickle Cell Unit, the Caribbean Institute for Health Research, the University of the West Indies (UWI). Professor Knight-Madden graduated from The UWI’s medical school in 1988. She completed training in Paediatrics at the Hospital for Sick Children in Toronto) and Fellowship training in Paediatric Pulmonology at Duke University Medical Center (DUMC) in Durham, NC. She completed an MSc in Biometry (DUMC), a PhD in Clinical Research (King’s College London) and a Certificate in Implementation Science (University of California San Francisco). She is Professor of Pediatric Pulmonology and Clinical Research.
Her PhD at King’s College London examined pulmonary complications of sickle cell disease; she also has interests in newborn screening, asthma, clinical trials and implementation science. She has published several book chapters and more than 80 papers in peer reviewed journals. She is active in the national Sickle Cell Technical Working Group (Co-Chair); the Caribbean Network of Researchers in Sickle Cell Disease and Thalassemia (Vice President); the SickKids Caribbean Initiative; Scientific Advisory Committee, Global Alliance of SCD Organizations (GASCDO); and two National Institutes of Health Data Safety Monitoring Boards for studies in Africa.

Kellyn A. George - Dominica

Kellyn George is a public health consultant, and sickle cell disease advocate. She works to improve the lives and livelihoods of persons with sickle cell disease in Dominica, the Caribbean region, and the wider world. Founder and managing director of the Sickle Cell Cares Foundation, as well as assistant secretary to the board of directors of the Caribbean Network of Researchers on Sickle Cell Disease and Thalassemia (CAREST) she works as a consultant to the United Nations. She created a non-profit organization in Dominica and also a youth led club (DSC Sickle Cell Club) to promote SCD awareness through advocacy, leadership, volunteerism, and health education.


For her constant dedication to her work, Ms George has been honoured as the first Dominican to receive the Queen’s Young Leader’s Award. She is also an ambassador of the One Young World Foundation, and an Associate of the Royal Commonwealth Society.


A patient of sickle cell herself, Ms. George believes it is important to give back to her communities and share the knowledge she has learnt along her journey. She hopes that her story can inspire many other young people afflicted with sickle cell to be empowered in their life journeys.


Ms. George holds a Bachelor of Science degree in Biology from Barry University; a Master of Public Health degree from the University of the West Indies; and an exclusive Queen’s Young Leader Leadership Certificate from Cambridge University.

Emmeline Lerebours, MD - Haïti

Dr Emmeline Lerebours has extensive experience in general paediatrics, built up over a nearly forty-year career. She began her medical career in southern Haiti, working as the first and only paediatrician at Immaculée Conception Hospital. There, she witnessed a substantial decrease in infant mortality rates. She later helped establish a 20-bed paediatric unit at Hôpital de la Communauté Haïtienne, which serves the metropolitan area of Port-au-Prince.After the 2010 earthquake, she began working at Saint Damien Hospital, which is affiliated with the organisation Nos Petits Frères et Sœurs (NPFS) and is the country’s only paediatric hospital. She remained there until her retirement last year.
She began to specialise in the care of children with sickle cell disease after collaborating with members of CAREST on a project to implement newborn screening for sickle cell disease in three hospitals in Port-au-Prince. As head of the sickle cell programme at Saint Damien Hospital, she contributed to the neonatal screening programme launched at this institution in 2018, which was later expanded to Hôpital Universitaire La Paix and the State University Hospital of Haiti with the support of the Pierre Fabre Foundation. As principal investigator, she observed a group of over 1,000 children with sickle cell disease from birth until they were 15 years old. She also participated in training numerous paediatric residents and in several research activities at Saint Damien Hospital. These included studies demonstrating the feasibility of introducing hydroxyurea in the treatment of children with sickle cell disease and a comparative study of Haitian children with sickle cell disease living in Haiti and Florida. These studies have been published in peer-reviewed scientific journals.
She continues to collaborate with the sickle cell clinic as a volunteer consultant.
Since 2011, she has also been involved in caring for children with congenital heart disease in collaboration with the NGO Mécénat Chirurgie Cardiaque.
An active member of both the Haitian Medical Association (AMH) and the Haitian Society of Paediatrics (SHP), Dr Emmeline Lerebours currently serves as an advisor on the SHP’s Board of Directors.

Edda HADEED, MD - Antigua & Barbuda

Dr. Edda Hadeed is a pediatrician and neonatologist with particular interest in SCD. She studied Medicine at the Friedrich Wilhelm University in Bonn, specialized in pediatrics at Bonn University Children’s Hospital and in neonatology at Duesseldorf University Children’s Hospital. She moved to Antigua in 1995 and has been in private practice as a pediatrician since 1996. Dr. Hadeed has been president of the Antigua and Barbuda Sickle Cell Association since 2015. She spearheaded Antigua’s SCD newborn screening programme and the Sheltered Workshop initiative.

Dre Ketty LEE, MD - Guadeloupe

Dr Ketty Lee is a clinical biologist. She has around 30 years’ experience working holistically in the field of haemoglobinopathies. She studied medicine and science at universities in mainland France, including Toulouse, Clermont-Ferrand and Paris. She then began her career as a practitioner at the Assistance Publique–Hôpitaux de Paris (AP–HP), where she provided care and follow-up for adults with sickle cell disease and thalassaemia and participated in genetic counselling for at-risk couples. 

For the past 15 years, she has dedicated herself exclusively to biology, particularly neonatal screening and the diagnosis of haemoglobin disorders. From 2011 to 2022, she managed the molecular genetics laboratory at the University Hospital of Guadeloupe, which primarily focuses on neonatal screening for sickle cell disease, phenotypic and molecular diagnosis of haemoglobin abnormalities, and prenatal diagnosis of sickle cell disease. This laboratory is a designated Reference Laboratory and the only one of its kind in the French overseas territories. 

Through the CAREST Network, she contributed to implementing neonatal screening for sickle cell disease in the Caribbean, particularly for newborns in Tobago, Grenada and Antigua. She also participated in training laboratory technicians from Haiti to deploy this screening locally. Dr Ketty LEE continues her work in Paris today. Dr Ketty LEE continues her work in Paris today.

Narcisse ELENGA, MD, PhD - Guyane

Narcisse ELENGA, MD, PhD, HDR is Professor of Pediatrics and Senior Consultant (PU-PH) at the University of the French West Indies and Cayenne General Hospital (French Guiana). A specialist in tropical pediatrics and clinical and perinatal epidemiology, his research focuses on mother-to-child HIV transmission, sickle cell disease and red blood cell disorders, arboviral infections (dengue, Zika), and health inequalities in tropical settings.


He serves as Head of the Women and Children Division and Head of the Department of Pediatric Medicine and Surgery at Cayenne Hospital. He coordinates the Reference Center for Sickle Cell Disease and Rare Red Blood Cell Disorders in French Guiana, as well as the regional rare diseases coordination platform (COMARG). He is also Director of the Pediatric Residency Program (DES).


He holds a Habilitation (HDR), a PhD in Clinical Research and Public Health, and completed advanced training at Harvard Medical School. He maintains an active research profile (h-index: 25; 3,599 citations) and is involved in national and Caribbean scientific networks and collaborations.

Professor Monika Asnani, MD, PhD - Jamaica

Monika Asnani has been a board member of CAREST since 2014. She is a Professor of Family Medicine and Epidemiology and the current Director of the Sickle Cell Unit, Caribbean Institute for Health Research at The University of the West Indies (UWI) in Jamaica. She has over 22 years’ experience of providing clinical care for persons with sickle cell disease (SCD). Her focus of research is :

  • psychosocial outcomes and determinants in SCD 
  • sickle nephropathy.

Her work has advanced understanding of predictors of renal function decline in SCD and has sought to validate methods to determine presence of early sickle nephropathy. She has validated and tested various tools to examine quality of life in children, adolescents and adults with SCD in Jamaica. 

Her current research programmes cover Hydroxyurea utilization in Jamaica, Sickle Kidney disease, Ageing in SCD, Social determinants of SCD outcomes, among others.

She is a graduate of the UWI and was awarded the M.B.B.S. degree in 1992. Her thesis for D.M. Family Medicine in 2006 examined the Quality of Life of Patients with SCD. She completed in 2014 her PhD in Epidemiology with a focus on the Epidemiology of Sickle Nephropathy.

Dr Fabrice TUAMBILANGANA, MD - Martinique

Dr. Fabrice Tuambilangana is a hospital practitioner at the Adult Sickle Cell Referral Center (CRDA) of the Martinique University Hospital.
A specialist in the management of sickle cell disease and other constitutional red blood cell disorders, he holds a University Diploma awarded by the University of Créteil. In this capacity, he provides long-term patient follow-up through dedicated specialized consultations within the CRDA.
He also holds a postgraduate qualification in Pain Assessment and Management. In addition, he practices at the Pain Assessment and Treatment Center (CETD) of the Martinique University Hospital, where he notably serves as Head of the Sickle Cell Care Pathway.

Dre Ngozi Leticia .O. KESHI, MD - Trinidad & Tobago

Dr. Ngozi Leticia .O. Keshi works as a Specialist Medical Officer in the Department of Paediatrics at the Scarborough General Hospital Tobago, Trinidad and Tobago. Dr. Keshi obtained her M.B.B.S from the University of Benin, Benin City, Nigeria in 1999. In 2014 she obtained a IHTC Fellowship Certificate in the management of Inherited Bleeding Disorders from the International Haemophilia Treatment Centre at the University of North Carolina, Chapel Hill, U.S.A.

In 2017 she obtained her membership of the Royal college of Paediatrics and Child Health (M.R.C.P.C.H.). In 2019 Dr. Keshi was elected into the Board of CAREST. In 2021 Dr. Keshi was appointed as one of the medical directors of the Society for Inherited and Severe Blood Disorders Trinidad and Tobago, Limited (SISBDTT).

Dr. Keshi has interest in Sickle Cell and has been involved with the Universal Newborn Screening for Sickle Cell programme in Tobago since its inception. She also has interest in the management of Inherited Bleeding Disorders and recently completed Immune Tolerance Induction in Paediatric patients with Haemophilia who developed inhibitors to clotting factor concentrates.