Program

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Time indicated in the programme is Paris Time.

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Amphitheatre AB
16/06
09:00 - 10:00

Welcome Speeches
Opening session

09:00 - 09:20
Welcome by Chairs

Mariane DE MONTALEMBERT (FRANCE) , Isaac ODAME (CANADA)

09:20 - 09:30
Dean of the Faculty of Medicine of the University of Paris

Philippe RUSZNIEWSKI (FRANCE)

09:30 - 09:40
Patient highlighting the need for this meeting and the significance of their participation. What do they want to achieve?

09:40 - 09:50
Overview of the Program and its holistic design to gain and share knowledge with patients, caregivers and researchers

Kalpna GUPTA (UNITED STATES)

09:50 - 10:00
Announcements by Local Organizing Committee

Amphitheatre AB
16/06
10:00 - 11:00

Plenary Session 1 *
Plenary session
With the support of Vertex

Chair: Mariane DE MONTALEMBERT (FRANCE)  

10:00 - 10:30
Progress in Management of Sickle Cell Disease - since the 3rd Global Congress in 2017

Alexis THOMPSON (UNITED STATES)

10:30 - 11:00
Roundtable on State of Sickle Cell Disease in Africa and India

Leon TSHILOLO (CONGO, THE DEMOCRATIC REPUBLIC OF THE), Kalpna GUPTA (UNITED STATES)

*Speakers of the session are not financed by Vertex

16/06
11:00 - 11:30

Coffee Break
Break

Amphitheatre AB
16/06
11:30 - 13:00

Session 1: Advances in Sickle Cell Disease pathobiology: From red blood cells to white blood cells
Simultaneaous sessions 1

Chairs: Loic GARCON (FRANCE)  , Mohandas NARLA (UNITED STATES)  

11:30 - 12:00
Ineffective erythropoiesis and central anemia in Sickle Cell Disease

Mohandas NARLA (UNITED STATES)

12:00 - 12:30
Targeting fetal hemoglobin expression in Sickle Cell Disease for novel therapies

Lionel BLANC (UNITED STATES)

12:30 - 13:00
Sickle Cell Disease, from a genetic red cell disease to an inflammation pathology

Caroline LE VAN KIM (FRANCE)

Amphitheatre C
16/06
11:30 - 13:00

Session 2: Transfusion
Simultaneaous sessions 1

Chairs: Saliou DIOP (SENEGAL)  , France PIRENNE (FRANCE)  

11:30 - 11:52
Persistance of inflammation despite chronic transfusion

Bérengère KOEHL (FRANCE)

11:52 - 12:14
Prevention and treatment of allo-immunization

France PIRENNE (FRANCE)

12:14 - 12:36
Transfusion in Africa

Saliou DIOP (SENEGAL)

12:36 - 12:58
Iron overload in patients with Sickle Cell Disease

Thomas COATES (UNITED STATES)

Room Invalides / Concorde
16/06
11:30 - 13:00

Session 3: Patients' Perspective
Simultaneaous sessions 1

Chairs: Kunle ADEKILE (KUWAIT)  , Raffaella COLOMBATTI (ITALY)  

11:30 - 12:00
Eurobloodnet and EHA actions

Noemi ROY (UNITED KINGDOM)

12:00 - 12:30
Influence of social deprivation

Melissa TAYLOR (FRANCE)

12:30 - 13:00
Experience of the expertise centre of Bamako, Mali

Dapa DIALLO (MALI)

Amphitheatre AB
16/06
13:00 - 14:00

Satellite Symposium 1
Sponsored session

16/06
13:00 - 14:30

Lunch
Lunch

Amphitheatre AB
16/06
14:30 - 16:00

Session 4: New insights on pathophysiology
Simultaneaous sessions 2

Chairs: Nicola CONRAN (BRAZIL)  , Caroline LE VAN KIM (FRANCE)  

14:30 - 14:52
Innate immunity cells, major actors of Sickle Cell Disease

Slimane ALLALI (FRANCE)

14:52 - 15:14
Targeting inflammatory pathways in Sickle Cell Disease

Nicola CONRAN (BRAZIL)

15:14 - 15:36
Role of hemolysis

Lucia DE FRANCESCHI (ITALY)

15:36 - 15:58
Molecular and Pathophysiological basis of Vaso-occlusive Crisis in Sickle Cell Disease

Bisnu Prasad DASH (INDIA)

Amphitheatre C
16/06
14:30 - 16:00

Session 5: Neonatal screening
Simultaneaous sessions 2

Chairs: Baba INUSA (UNITED KINGDOM)  , Stephan LOBITZ (GERMANY)  

14:30 - 14:52
Consortium on Newborn Screening in Africa (CONSA supported by ASH)

Obiageli NNODU (NIGERIA)

14:52 - 15:14
Newborn Screening in Brazil

Fernando COSTA (BRAZIL)

15:14 - 15:36
Acceptability, diagnostic performances and feasibility of newborn screening for sickle cell disease using two rapid diagnostic tests: "Sickle SCAN®" and "HemotypeSC™" in Sub-Saharan Africa, Mali

Emilie LAURESSERGUES (FRANCE)

15:36 - 15:58
Neonatal screening and 5 years of follow-up in India

Manisha MADKAIKAR (INDIA)

Room Invalides / Concorde
16/06
14:30 - 16:00

Session 6: COVID-19
Simultaneaous sessions 2

Chairs: Dapa DIALLO (MALI)  , Noemi ROY (UNITED KINGDOM)  

14:30 - 15:00
Risk factors for severe COVID-19 in hospitalized sickle cell disease patients: the French experience

Jean Benoit ARLET (FRANCE)

15:00 - 15:30
COVID-19 in the USA: The 2022 Perspective

Elizabeth KLINGS (UNITED STATES)

15:30 - 16:00
Covid-19 and Sickle Cell Disease in Africa: clinics and the seroprevalence study

Leon TSHILOLO (CONGO, THE DEMOCRATIC REPUBLIC OF THE)

16/06
16:00 - 16:20

Coffee Break
Break

Amphitheatre AB
16/06
16:20 - 17:50

Session 7: Clinical variability in Sickle Cell Disease
Simultaneaous sessions 3

Chairs: Frederic PIEL (UNITED KINGDOM)  , Brigitte RANQUE (FRANCE)  

16:20 - 16:42
Global variations in sickle cell disease severity, mortality and morbidity

Frederic PIEL (UNITED KINGDOM)

16:42 - 17:04
Sickle Cell Disease- from bedside to bench to bedside using 2 examples, fetal hemoglobin and pyruvate kinase

Swee Lay THEIN (UNITED STATES)

17:04 - 17:26
Fetal Hemoglobin in Sickle Cell Anemia

Martin STEINBERG (UNITED STATES)

17:26 - 17:48
Sickle Cell Disease phenotypic variability among Gulf Arabs

Kunle ADEKILE (KUWAIT)

Amphitheatre C
16/06
16:20 - 17:50

Session 8: Pregnancy
Simultaneaous sessions 3

Chairs: Dipty JAIN (INDIA)  , Samuel OPPONG (GHANA)  

16:20 - 16:38
Sickle cell disease in pregnancy: maternal and perinatal outcomes in the current state of care in France

Laure JOSEPH (FRANCE)

16:38 - 16:56
Pathological implications in Pregnancy in Sickle Cell Disease

Ibrahima SANOGO (IVORY COAST)

16:56 - 17:14
Perinatal Outcome in Mother's with Sickel Cell Disease (HbSS, Arab-Indian Haplo type);  A prospective study from India 

Rabindra Kumar JENA (INDIA)

17:14 - 17:32
Mothers with sickle cell disease in Eastern India

Siris PATEL (INDIA)

17:32 - 17:50
Multi-disciplinary care to prevent maternal and fetal death in women with Sickle Cell Disease

Samuel OPPONG (GHANA)

Room Invalides / Concorde
16/06
16:20 - 17:50

Session 9: Psychosocial aspects
Simultaneaous sessions 3

Chairs: Kofi ANIE (UNITED KINGDOM)  , Marsha TREADWELL (UNITED STATES)  

16:20 - 16:42
Psychological dimensions in Sickle Cell pain management

Kofi ANIE (UNITED KINGDOM)

16:42 - 17:04
Issues of psychosocial assistance to patients with sickle cell disease and their family : Experience of the association CID/Burkina Faso

Dramane BANAON (BURKINA FASO)

17:04 - 17:26
Quality of life in Sickle Cell Disease

Marsha TREADWELL (UNITED STATES)

17:26 - 17:48
Sickle Cell Disease Implementation Consortium: Overview of 5 years of Progress

Robert W. GIBSON (UNITED STATES)

Amphitheatre AB
16/06
17:55 - 18:35

Satellite Symposium 2
Sponsored session

Amphitheatre AB
16/06
18:35 - 19:55

Oral presentation selected from abstracts
Abstracts session

Chairs: Beatrice GULBIS (BELGIUM)  , Baba INUSA (UNITED KINGDOM)  

18:35 - 18:50
O-01 - Hydroxyurea reduces the transfusion burden in children with sickle cell anemia in sub-Saharan Africa: the REACH experience

Alexandra POWER-HAYS (UNITED STATES)

18:50 - 19:05
O-02 - Radiomics and artificial intelligence for identification and monitoring of silent cerebral infarcts in sickle cell disease: first analysis from the GENOMED4ALL European project

Maria Paola BOARO (ITALY)

19:05 - 19:20
O-03 - Etavopivat treatment for up to 12 weeks in patients with sickle cell disease is well tolerated and improves red blood cell health

Marilyn TELEN (UNITED STATES)

19:20 - 19:35
O-04 - Incidence of vaso-occlusive crises in patients with sickle cell disease (SCD) and a high baseline disease burden treated with crizanlizumab in a real-world setting: Results from a managed access program (MAP)

Ana Cristina SILVA-PINTO (BRAZIL)

19:35 - 19:38
PI-01 - GRNDaD and CoUSIn: Investigator-initiated collaborations to improve care in Sickle Cell Disease

Julie KANTER WASHKO (UNITED STATES)

19:38 - 19:41
PI-02 - Follow-up results of a phase 2 study assessing the safety and efficacy of mitapivat treatment, an oral pyruvate kinase activator, for up to 60 weeks in subjects with sickle cell disease

Myrthe J. VAN DIJK (NETHERLANDS)

19:41 - 19:44
PI-03 - The Effect of Hydroxyurea in the Gut Microbiome of Angolan Children with Sickle Cell Disease

Mariana DELGADINHO (PORTUGAL)

19:44 - 19:47
PI-04 - Oxygen gradient ektacytometry-derived biomarkers are associated with the occurrence of acute complications in sickle cell disease

Minke A.e RAB (NETHERLANDS)

19:47 - 19:50
PI-05 - Pharmacodynamic effects of AG-946, a highly potent novel activator of pyruvate kinase, in ex vivo treatment of red blood cells from sickle cell disease patients

Minke A.e RAB (NETHERLANDS)

19:50 - 19:53
PI-06 - The Nurse Champion Model for Newborn screening for Sickle Cell Disease in sub-Saharan Africa: An Implementation Science Protocol

Robert W. GIBSON (UNITED STATES)

Amphitheatre C
16/06
18:35 - 20:05

Session 10: Patients’ Session
Simultaneaous sessions 1

Chairs: Raffaella COLOMBATTI (ITALY)  , Noemi ROY (UNITED KINGDOM)  

18:35 - 19:05
Fatigue in Sickle Cell Disease: The Significance of An “Orphaned” Symptom

Brenda POKU (UNITED KINGDOM)

19:05 - 19:35
Experience of pain and of bone marrow transplant

Luce KUSEKE SONA (FRANCE)

19:35 - 20:05
Living, growing and aging with a chronic disabling desease : life course of sickle cell patient

Michelle ADJIBI (FRANCE)

Amphitheatre AB
17/06
08:30 - 08:50

Short Satellite Symposium 3
Sponsored session

Amphitheatre AB
17/06
09:00 - 10:30

Plenary Session 2
Plenary session

Chair: Kalpna GUPTA (UNITED STATES)  

09:00 - 09:30
Origin of Sickle Cell Disease - Evolutionary Genetics of Sickle Cell Disease: Implications for Prevention and Care

Ambroise WONKAM (UNITED STATES)

09:30 - 09:42
State of Sickle Cell Disease: Progress and challenges - West Indies

Jennifer KNIGHT-MADDEN (JAMAICA)

09:42 - 09:54
State of Sickle Cell Disease: Progress and challenges - Brazil

Clarisse LOBO (BRAZIL)

09:54 - 10:06
State of Sickle Cell Disease: Progress and challenges - Europe

Baba INUSA (UNITED KINGDOM)

10:06 - 10:18
State of Sickle Cell Disease: Progress and challenges - USA

Michael DEBAUN (UNITED STATES)

10:18 - 10:30
State of Sickle Cell Disease: Progress and challenges - India

Vinita SRIVASTAVA (INDIA)

17/06
10:30 - 11:00

Coffee Break
Break

Amphitheatre AB
17/06
11:00 - 12:30

Session 11: Pain and Integrative Health
Simultaneaous sessions 4

Chairs: Slimane ALLALI (FRANCE)  , Emmanuel BALANDYA (UNITED REPUBLIC OF TANZANIA)  

11:00 - 11:20
Integrative approaches to combat pain: What can we do?

Kalpna GUPTA (UNITED STATES)

11:20 - 11:40
Does arginine influence vaso-occlusive bone pain episodes? Lessons from Nigeria

Richard ONALO (NIGERIA)

11:50 - 12:10
Why does “emotional stress” promote VOC?

Thomas COATES (UNITED STATES)

12:10 - 12:30
Communication by pain without frontiers

Eleonore KAFANDO (BURKINA FASO)

Amphitheatre C
17/06
11:00 - 12:30

Session 12: How to increase teaching of Sickle Cell Disease?
Simultaneaous sessions 4

Chairs: Patricia AGUILAR-MARTINEZ (FRANCE)  , Michael DEBAUN (UNITED STATES)  

11:00 - 11:30
State of the Art

Michael DEBAUN (UNITED STATES)

11:30 - 12:00
Digital Health Intervention to Increase Health Knowledge Related to Sickle Cell Disease

David-Zacharie ISSOM (SWITZERLAND)

12:00 - 12:30
The African experience of digital health

Jacques ELION (FRANCE)

Room Invalides / Concorde
17/06
11:00 - 12:30

Session 13: Session in french / Session en français
Simultaneaous sessions 4

Chairs: Jean Benoit ARLET (FRANCE)  , Corinne PONDARRE (FRANCE)  

11:00 - 11:30
La drépanocytose dans un pays en crise

Thelma Lorna NGUILELO (CENTRAL AFRICAN REPUBLIC)

11:30 - 12:00
Principes généraux de la prise en charge pédiatrique

Corinne PONDARRE (FRANCE)

12:00 - 12:10
O-05 - Recherche des variations génétiques liées à l'atteinte rénale chez les patients drépanocytaires au Cameroun (Afrique sub-saharienne)

Valentina Josiane NGO BITOUNGUI (CAMEROON)

12:10 - 12:20
O-06 - e-Drépanocytose : une plateforme francophone de formation ciblant les différents niveaux des systèmes de santé

Maxime COLLIN (FRANCE)

12:20 - 12:30
O-07 - Pratique transfusionnelle, complications post-transfusionnelles et facteurs de risque de la drépanocytose au Sénégal

Moussa SECK (SENEGAL)

Amphitheatre AB
17/06
12:30 - 13:30

Satellite Symposium 4
Sponsored session

17/06
12:30 - 14:00

Lunch
Lunch

Amphitheatre AB
17/06
14:00 - 15:30

Session 14: Organ dysfunction
Simultaneaous sessions 5

Chairs: Pablo BARTOLUCCI (FRANCE)  , Elizabeth KLINGS (UNITED STATES)  

14:00 - 14:30
Role and mechanism of extracellular heme in organ injury in sickle cell disease

Solomon OFORI-ACQUAH (GHANA)

14:30 - 15:00
Impact of exercise in sickle cell disease

Pablo BARTOLUCCI (FRANCE)

15:00 - 15:30
Acute Chest Syndrome in 2022: What We’ve Learned Since the Cooperative Study of Sickle Cell Disease

Elizabeth KLINGS (UNITED STATES)

Amphitheatre C
17/06
14:00 - 15:30

Session 15: Research in Africa
Simultaneaous sessions 5

Chairs: Mariane DE MONTALEMBERT (FRANCE)  , Russell WARE (UNITED STATES)  

14:00 - 14:22
CADRE and MIDAS studies in Africa

Brigitte RANQUE (FRANCE)

14:22 - 14:44
The data base in Mali

Aldiouma GUINDO (MALI)

14:44 - 15:06
Hydroxurea trials in Africa

Russell WARE (UNITED STATES)

15:06 - 15:28
Ethics and regulation

Miguel ABBOUD (LEBANON)

Room Invalides / Concorde
17/06
14:00 - 15:30

Session 16: International networks
Simultaneaous sessions 1

Chairs: Jacques ELION (FRANCE)  , Jennifer KNIGHT-MADDEN (JAMAICA)  

14:00 - 14:22
ARISE

Fedele (duccio) BONIFAZI (ITALY)

14:22 - 14:44
CAREST

Marie-Dominique HARDY-DESSOURCES (GUADELOUPE)

14:44 - 15:06
REDAC

Leon TSHILOLO (CONGO, THE DEMOCRATIC REPUBLIC OF THE)

15:06 - 15:28
SickleInAfrica

Daima BUKINI (UNITED REPUBLIC OF TANZANIA)

17/06
15:30 - 16:00

Coffee Break
Break

Amphitheatre C
17/06
16:00 - 17:30

Session 17: Neurological complications
Simultaneaous sessions 5

Chairs: Michael DEBAUN (UNITED STATES)  , Fenella KIRKHAM (UNITED KINGDOM)  

16:00 - 16:30
The genetics of cerebrovascular disease in Sickle Cell Disease

David REES (UNITED KINGDOM)

16:30 - 17:00
Neurology, cognition, and brain injury

Fenella KIRKHAM (UNITED KINGDOM)

17:00 - 17:30
Screening and treatment in Africa

Michael DEBAUN (UNITED STATES)

Amphitheatre AB
17/06
16:00 - 17:45

Oral presentation selected from abstracts
Abstracts session

Chairs: Miguel ABBOUD (LEBANON)  , Clarisse LOBO (BRAZIL)  

16:00 - 16:15
O-08 - Neurocognitive Impairment in Ugandan Children with Sickle Cell Anemia Compared to Non-sickle Siblings

Nancy GREEN (UNITED STATES)

16:15 - 16:30
O-09 - Durable engraftment after pharmacological pre-transplant immunosuppression followed by reduced-toxicity myeloablative haploidentical stem cell transplantation in highly HLA-immunized adults with sickle cell disease

Sabine FÜRST (FRANCE)

16:30 - 16:45
O-10 - Sickle Cell Health Awareness, Perspectives and Experiences (SHAPE) survey: findings on the burden of sickle cell disease and unmet needs as reported by patients and caregivers

Isaac ODAME (CANADA)

16:45 - 17:00
O-11 - Automated quantification of pocked red blood cells correlates with spleen size in Sickle Cell Disease

Abdoulaye SISSOKO (FRANCE)

17:00 - 17:15
O-12 - Building Local Capacity for Hydroxyurea Pharmacokinetics and Precision Dosing in Low-Resource Settings

Luke SMART (UNITED STATES)

17:15 - 17:30
O-13 - Inhibition of the Endocannabinoid Regulating Enzyme Monoacylglycerol Lipase Ameliorates the Hyper-nociceptive Phenotype in the Berkeley Mouse Model of Sickle Cell Disease

Kennedy GOLDSBOROUGH (UNITED STATES)

17:30 - 17:33
PI-07 - The International Hemoglobinopathy Research Network (INHERENT): an international initiatve to study the role of genetic modifiers in hemoglobinopathies

Petros KOUNTOURIS (CYPRUS)

17:33 - 17:36
PI-08 - High disease burden, morbidity and mortality among children with sickle cell anaemia in Uganda

Ruth NAMAZZI (UGANDA)

17:36 - 17:39
PI-09 - Lessons learned from one decade experience of the " Centre de Recherche et de Lutte contre la Drépanocytose (CRLD) " in Bamako, Mali.

Dapa DIALLO (MALI)

17:39 - 17:42
PI-11 - Extreme Variability of the Prognostic Value of Biological Parameters According to Statistical Methodology in Pediatric Sickle Cell Disease Cohort Studies

Malika BENKERROU (FRANCE)

17/06
17:30 - 19:00

Poster Visit
Abstracts session

Amphitheatre AB
17/06
17:45 - 18:45

Satellite Symposium 5
Sponsored session

Amphitheatre AB
18/06
08:30 - 10:30

Plenary Session 3 - A look into the Future with HOPE
Plenary session

Chairs: Olivier HERMINE (FRANCE)  , Swee Lay THEIN (UNITED STATES)  , Eliane GLUCKMAN (FRANCE)  , Miguel ABBOUD (LEBANON)  

08:30 - 08:50
Understanding gene therapy for Sickle Cell Disease

Julie KANTER WASHKO (UNITED STATES)

08:30 - 09:30
Gene Therapy

08:50 - 09:10
Safety: current data and clues to improve it

Marina CAVAZZANA (FRANCE)

09:10 - 09:30
CRISPR-Cas9 editing for Sickle Cell Disease

Haydar FRANGOUL (UNITED STATES)

09:30 - 10:15
Hematopoietic stem cell transplant

09:30 - 09:40
Haplo-identical HSCT

Nathalie DHEDIN (FRANCE)

09:40 - 09:50
Low-cost transplant

Stalin RAMPRAKASH (INDIA)

09:50 - 10:00
Less intensive approaches to cure: reduced intensity and nonmyeloablative hematopoietic cell transplantation for sickle cell disease

Gregory GUILCHER (CANADA)

10:00 - 10:10
Haplo-identical transplantation in Africa

Gaurav KHARYA (INDIA)

10:15 - 10:30
Patients’ testimonies

David-Zacharie ISSOM (SWITZERLAND)

18/06
10:30 - 11:00

Coffee Break
Break

Amphitheatre AB
18/06
11:00 - 12:00

Plenary Session 4
Plenary session

Chairs: Kalpna GUPTA (UNITED STATES)  , Mariane DE MONTALEMBERT (FRANCE)  

11:00 - 11:30
Synthesis of the Congress and reflections on how advances in technology, pharmaceuticals, and behavioural sciences can be applied to the management of people with Sickle Cell Disease globally, including those living in low-resource setting

Isaac ODAME (CANADA)

11:30 - 11:45
Patients' Declaration

11:45 - 12:00
Homage to Jacques Elion

Amphitheatre AB
18/06
12:00 - 12:00

Closing Remarks
Closing session