5th Caribbean Conference on Sickle Cell Disease and Thalassemia

Wednesday 24th

3pm - 5pm Information meeting, debate (public: final year pupils, students at the University of Guyana) : 

What is CAREST?

Research careers

International exchanges and research Participants: representatives from Inserm, the universities of Paris Diderot, Paris Descartes, West Indies, São Paulo, Havana, Santo Domingo, the Federal University of Rio de Janeiro, Imperial College of London, the University of Guyana and the Guyana Scientific Interest Group.

7.00-8.00 p.m. - Opening ceremony 

Thursday 25th

7.00am - 8.30am - Registration 

Epidemiology of red blood cell diseases
Moderators: Jacques Elion & Narcisse Elenga 

8.30am - 8.50am - Global epidemiology of haemoglobinopathies: Frédéric Piel (London, UK)

8.50am - 9.05am Focus on the Caribbean: Marc Romana (Pointe-à-Pitre, Guadeloupe, France)

9.05am - 9.25am  G6PD deficiency, update: Frédéric Galactéros (Créteil, France)

9.25am - 9.45am - Epidemiological transition of sickle cell disease in West and Central Africa: changes in morbidity and mortality in urban areas: Brigitte Ranque (GR-Ex - Paris, France)

9.45am - 10.00amDiscussion

10.00 - 10.20 a.m. Selected oral presentations

"Sickle Cell Disease in Venezuela is Currently in Crisis (Venezuela)": Adriana Bello (Caracas, Venezuela)

"Cuban Program for Prevention of Sickle Cell Disease. Thirty-five years results (Cuba)": Beatriz Marcheco-Teruel (La Habana, Cuba)

10.20am - 10.35am Discussion

10.35 a.m. - 11.00 a.m. Break

Comprehensive care: recommendations Moderators : Mariane de Montalembert & Ketty Lee 

11.00am - 11.20am Indications for splenectomy in red blood cell membrane disorders: Loïc Garçon (Amiens, France)

11.20am - 11.40am New thalassaemia therapies: Olivier Hermine (GR-Ex - Paris, France)

11.40am - 12.00pm - Sickle cell disease - vaccination coverage: Narcisse Elenga (Cayenne, French Guyana)

12.00 - 12.15 pm - Discussion

12.15pm - 1.35pm - Meals

Diagnosis and Organisation of the DNN
Moderators : Marvin Reid & Marie-Dominique Hardy-Dessources 

1.35pm - 1.50pm - Summary of experience in the non-French-speaking Caribbean: Monica Asnani (Kingston, Jamaica)

 1.50pm - 2.05pm - Synthesis of Francophone experience and collaboration with Tobago and Grenada: Ketty Lee (Pointe-à-Pitre, Guadeloupe, France)

2.05pm - 2.25pm - New screening strategies: from rapid tests to very high throughput platforms: Jacques Elion (GR-Ex - Paris, France)

2.25pm - 2.45pm - Selected oral presentations

"Newborn screening in Cap Haitian, Haiti: present and future": Ofelia Alvarez (Miami, USA)

"Presence of non-African haplotypes in sickle cell patients in Colombia probably due to admixture among amerindian, european, and african populations": Cristian Fong (Cali, Colombia)

2.45pm - 3pm - Discussion

3.00 pm - 3.20 pm - Pause

Specific themes
Moderators : Bérengère Koehl & Gisèle Elana 

3.20pm - 3.40pm - Management of pregnancies in women with sickle cell disease in French Guiana: historical aspects, adaptation of management: Gabriel Carles (Saint Laurent du Maroni, French Guiana)

3.40pm - 3.55pm - New approaches to pain treatment: Maryse Etienne-Julan (Pointe-à-Pitre, Guadeloupe, France)

3.55pm - 4.10pm - Antibiotic kinetics in patients with sickle cell disease: Bérengère Koehl (Paris, France)

4.10pm - 4.25pm - Transcranial Doppler echo: remote analysis, experience in the Dominican Republic: Rosa Nieves (Santo-Domingo, Dominican Republic)

4.25pm - 4.40pm - The impact of sickle cell disease at school: Corinne Pondarré (Créteil, France)

4.40pm - 4.50pm - Selected oral presentations

"Implications of a paediatrician-psychologist tandem for sickle cell disease care and impact on cognitive functioning": Adrienne Lerner (Paris, France)

4.50pm - 5.05pm - Discussion

5.05pm - 5.20pm - Pause

5.20pm - 6.00pm - Round Table : Therapeutic education

Anne Jolivet, Chantal Placide (CHOG - French Guyana), Gylna Loko (EVAD - Lamentin, Martinique, France), Alizée Sterlin (ROFSED - Paris, France), Gisèle Elana (Paediatrics, Martinique, France), Lydia Divialle-Doumdo (UTD - Guadeloupe, France)

6.00 pm - 7.00 pm - Communications aimed at the general public
Moderators : Edda Hadeed & Gylna Loko 

Involving patients as experts in the design of mobile health tools to support self-management of sickle cell disease: David Issom (Geneva, Switzerland)

Haematopoietic stem cell transplant: Jean-Hugues Dalle (Paris, France)

Gene therapy: Emmanuel Payen (GR-Ex - Fontenay-aux-Roses, France)

Friday 26th

Therapeutics : Hydroxycarbamide
Moderators : Caroline Le Van Kim & Monika Asnani

8.00am - 8.20am - American experience: Maximum tolerated dose: Russell Ware (Cincinnati, USA)

8.20am - 8.40am - Experience from India: low fixed dose: Dipty Jain (Nagpur, India)

8.40am - 8.55am - Hydroxycarbamide and stroke - Jamaica: Marvin Reid (Kingston, Jamaica)

8.55am - 9.15am - Use of HU-ESCORT data for the French overseas departments and territories :
Children : Narcisse Elenga (Cayenne, French Guiana)
Adults : Maryse Etienne-Julan (Pointe-à-Pitre, Guadeloupe, France)

 9.15am - 9.30am - Discussion

9h30 - 9h50 - Therapeutic applications of hepcidin: Sophie Vaulont (GR-Ex - Paris, France)

9.50am - 10.20am Selected oral presentations:

"Fetal haemoglobin in sickle cell disease: new insights into the expression, cellular distribution and the effect of hydroxycarbamide on the cellular level": Sara El Hoss (CGRF-Paris, France)

"Identification of components of the mechanistic target of rapamycin complex 1 (mtorc1) pathway as potential regulators of fetal globin": Danitza M. Nébor (Bar Harbor, ME, USA)

"Hydroxyurea treatment in sickle cell anemia induces changes in microparticles characteristics and their impact on endothelial cell phenotype": Yohann Garnier (Pointe-à-Pitre, Guadeloupe, France)

10.20am - 10.35am Discussions

10.35am - 10.50am  Break

Transfusion
Moderators : Yves Colin Aronovicz & Rinaldo Villaescusa 

10.50am - 11.10am - Infectious risk and transfusion: the Brazilian experience: Luiz Amorim (Rio de Janeiro, Brazil)

11.10 a.m. - 11.25 a.m. - Storage lesions: should young packed red blood cells be transfused? Caroline Le Van Kim (GR-Ex - Paris, France)

11.25am - 11.45am Adaptation between donors, donations, circuits and patients: a challenge for French Guyana: Olivier Garraud (Paris, France)

11.45am - 12.00pm - Discussion

12.00 - 12.40 pm - Round table: Blood donation in French Guiana
The role of transfusion in the management of patients with sickle cell disease: Lydia Divialle (Pointe-à-Pitre, Guadeloupe, France)
Blood donation in French Guiana: point of view of the EFS Antilles-Guyane: Françoise Maire (Cayenne, French Guiana, France)
Blood donation in French Guyana: an INTS perspective: Olivier Garraud (Paris, France)

12.40pm - 2.00pm - Meals

Curative treatments
Moderators : Russell Ware & Maryse Etienne-Julan 

2.00 pm - 2.20 pm - Haematopoietic Stem Cell Transplant : 

Global experience: Jean-Hugues Dalle (Paris, France)

2.20pm - 3.00pm Round table Experience in the French overseas departments (G. Elana, Martinique), in mainland France (J-H Dalle, Paris) and in Trinidad for thalassaemic patients (Waveney Charles, Trinidad and Tobago).

3.00 pm - 3.20 pm - Selected oral presentations

"BID cleavage pattern dependent on erythropoietin-induced casein kinase-1a determines the fate of erythroid precursors": Geneviève Courtois (Paris, France)

"Cell-derived microparticles in sickle cell disease chronic vasculopathy in sub-Saharan Africa": Abdoul Karim DEMBELE (CGRF-Paris, France)

3.20 pm - 3.30 pm - Discussion

3.30 pm - 3.45 pm -Break

Genetic architecture and gene therapy for haemoglobinopathies
Moderators : Olivier Hermine & Marc Romana

3.45pm - 4.05pm - Gene therapy for haemoglobinopathies: Emmanuel Payen (GR-Ex - Fontenay-aux-Roses, France)

4.05pm - 4.25pm Genetics, genomics and sickle cell disease: Laurent Gouya (GR-Ex, Paris, France)

4.25pm - 4.35pm Discussions

4.35pm - 5.30pm Debate - Priority : Curing sickle cell disease versus improving care

4.35pm - 4.55pm Priority: curing sickle cell anaemia: Marianne de Montalembert (Paris, France)

4.55pm - 5.15pm - Priority: improving care: Russell Ware (Cincinnati, USA)

5.15pm - 5.30pm - Discussion

Simultaneous session dedicated to associations
Moderator: Vincent Vantilcke 

8.00am - 9.35am - Presentation of each association: objectives, activities,

9.35am - 10.35am Simulation of a therapeutic patient education session run by the ROFSED: Alizée Sterlin (Paris, France)

10.35am - 10.50am Break

10.50am - 11.25am "Intensified therapy in sickle cell disease: should it be administered before or after the onset of complications? Mariane de Montalembert (Paris, France)

11.25 a.m. - 12.15 p.m. - Discussions on sickle cell anaemia and health inequalities, led by psychologists, social workers and an official from the MDPH (departmental centre for the disabled): Constance Leconte, Joelle Chandey, Josette Ponceau, Yolène Lutin Montina (Cayenne, French Guiana)