13th International Conference on Thalassemia & Hemoglobinopathies

The Thalassemia International Federation (TIF) will host the Thalassemia International Federation World Congress (TIF 2013), in collaboration with the Regional Collaborating Office of TIF – Abu Dhabi, H.H. Sheikh Sultan Bin Khalifa Al Nahyan Humanitarian & Scientific Foundation, Sultan Bin Khalifa International Thalassemia Award, and with the support of the Emirates Thalassemia Society.

The 13th International Conference on Thalassemia & Hemoglobinopathies is a four day event that is expected to attract over 1,500 participants and will feature a comprehensive scientific program covering all aspects of prevention, management and care of Thalassemia and other blood diseases in an enriching educational experience.

In addition, the congress will include a medical exhibition and a unique social and cultural program designed for visitors to experience the Arabian Hospitality of the UAE.

 

 
Detailed Program

DAY 1 – Sunday, 20 October 2013
08:30-16:00 REGISTRATION
16:00-16:30 Opening Addresse

Welcome Message – Panos Englezos, TIF President
Milestones and Current Initiatives of the Thalassaemia International Federation – Dr. Androulla Eleftheriou, TIF Executive Director

PS. KEYNOTE SESSION - Chairs: D. J. Weatherall & E. Baysal
16:30-16:50 The Global Status of Haemoglobin Disorders- D.J. Weatherall
16:50-17:10 Milestones in The History of Haemoglobin Research – M. D. Cappellini
17:10-17:30 Ensuring Quality of Life- the patient’s perspective – I. Ivanov
17:30-17:50 Quality of life – the medical perspective – A. Taher
18:00-19:00 Welcome Refreshments
19:00-21:00 SITA Award Ceremony

DAY 2 – Monday, 21 October 2013
Room A
 
E1. PATHOPHYSIOLOGY of BETA-THALASSAEMIA
Chairs: J. Porter & S.L. Thein
09:00-09:20 Globin Genes: Haemoglobin Synthesis and Regulation- D. Higgs
09:20-09:40 Beta-thalassaemia: Pathophysiology – J. Porter
09:40-10:00 Genetic Modifiers: Genotype-Phenotype Correlation – S.L.Thein
10:00-10:30 Questions and Answers / Panel Discussion
 Room B
CHALLENGING ISSUES – Chairs: A. Eleftheriou / S. Fucharoen / M. Karimi
09:00-09:30 Medicines Supply Shortages in economic crisis and globalisation of medicine production – F. Houyez
09:30-09:40 Questions and Answers / Panel Discussion
C5. TRANSPLANTATION – Chairs : Y. Beuzard / A. Al-Jeffri
09:40-10:00 Bone Marrow Transplantation in Thalassaemia and Sickle Cell  - A. Al Jeffri
10:00-10:20 Establishment of Low Cost, Full–Fledged BMT Units- L. Faulkner
10:20-10:30 Questions and Answers / Panel Discussion
Capital Suite 5
OP10. Epidemiology
08:30-10:00
  • A fresh glance at the national and provincial births of thalassemia new cases in Iran from 2001 to 2006, M.H. Dehshal
  • Results from national thalassemia prevention program in Iran 2007-2009, M. H. Dehshal
  • Frequency of Haemoglobinopathies: A Single Centre Cross Sectional Study from Islamabad, Pakistan, U. Waheed
  • Haemoglobinopathy Carrier Prevalence in The United Arab Emirates: First Analysis of The Dubai Health Authority Premarital Screening Program Results, K. Belhoul
  • Haemoglobinopathies in Hatay, V. V. Tas
  • Effectiveness and feasibility of transabdominal chorionic villous sampling procedure for prenatal diagnosis of â-thalassaemia in a Muslim majority community of Pakistan, S. Erum
  • Epidemiology and burden of alpha-thalassaemia, F. Piel
  • Global migration and the changing distribution of sickle haemoglobin, F. Piel
  • Individuals understanding of blood genetic disorders and pre-marital screening as a method of prevention in Saudi Arabia, M. el Hazmi
  • The multiregional Italian Thalassemia Registry: patient’s population changes and related iron chelation approach, L. Mangiarini
  • HbS: an emerging problem in Italy. The Latium example, M. P. Cappabianca
  • Implementation of prevention and control program for thalassemia at Maria Teresa Hospital, Lao PDR., K. Sanchaisuriya
  • Multi-stakeholder, multi-pronged strategies for thalassemia management, control & prevention: experiences from Bangalore, India, S. Gambhir
  • The role of being ‘carrier couples’ for Transfusion Dependent Thalassemia Major (TDTM) in reproductive behavior, Mazandaran, 2012, M. Kosaryan
OP11. Miscellaneous
10:00-10:30
  • The influence of the BCL11A polymorphism on the phenotype of patients with beta thalassemia could be affected by the beta globin locus control region and/or the Xmn1-HBG2 genotypic background, M. Neishabury
  • An overview of CFSD achievements in the field of Thalasaemia prevention and control in Islamic Republic of Iran, F. H. Bahremani
  • Pharmacologic Immunoablation by Reduced Toxicity conditioning and stem cell transplantation in high risk thalassemia ; A safe approach to disease control, S. Hongeng
  • Hand Hygiene Audit at Dubai Thalassemia Centre, M. L. Bakir
10:30-11:00 Coffee Break
Room A
E2.  CLINICAL OVERVIEW of β-THALASSAEMIA – Chairs: S.L.Thein / Y. Aydinok /A. Beshlawy
11:00-11:20 Transfusion Programs – A. Piga
11:20-11:40 Old and New Iron Chelators – J. Porter
11:40-12:00 Infections in Thalassaemia: A Major Challenge – Y. Aydinok
12:00-12:20 Improved Survival – C. Borgna-Pignatti
12:20-12:45 Questions and Answers / Panel Discussion
Room B
C2. CLINICAL ASPECTS of α-THALASSAEMIA – Chairs: S.  Fucharoen / V. Chan
11:00-11:20 α-thalassaemia: Molecular Mechanisms – J. Traeger-Synodinos
11:20-11:40 Genotype-Phenotype Correlations – S. Fucharoen
11:40-12:00 HbH Disease: A Clinical Overview  - V. Viprakasit
12:00-12:20 Iron Overload in HbH Disease – V. Chan
12:20-13:00 Questions and Answers / Panel Discussion
Capital Suite 5
OP12. Heart and Vascular
11:00-12:00
  • Cardiac Iron Overload and Heart Function by CMR In Different Phenotypic Groups of Thalassemia Major Patients., A. Pepe
  • N-terminal fragment of proBNP is a marker of high cardiac output cardiomyopathy evaluated by CMR in thalassemia syndromes., A. Pepe
  • N-terminal fragment of proBNP is a marker of risk for right ventricular dysfunction and cardiac complications in thalassemia major., A. Pepe
  • Direct and indirect involvement of HCV infection in the pathogenesis of myocardial fibrosis in thalassemia major, A. Pepe
  • Asymmetric Dimethylarginine Levels In Children With ¦¢-Thalassemia And Their Correlations To Tricuspid Regurgitant Jet Velocity, M. El-Shanshory
  • Cardiac iron measurement and iron chelation therapy in patients with ¦Â thalassaemia major: Experience from Taiwan, M. Yao Lu
  • Cytoplasmic sequestration of heat shock protein 70 (Hsp70) by excess of free I±-globin promotes ineffective erythropoiesis in I²-Thalassemia major (TM), J.A. Ribeil
  • Rare diseases reference Centers in order to improve thalassemia patient’s care, I. Thuret
  • A multi-ethnic multi-national approach to Ethical approval of clinical trials involving Thalassaemia patients, V. Giannuzzi
OP13. Iron Chelation
12:00-12:18
  • «The DEEP Project», S. Missouri-Khetab
  • Iron status and hepcidin serum level in newly diagnosed severe B thalassemia: time to start delivering iron chelation therapy – a longitudinal study, S. Susanah
  • The comparison of side effects and iron excretion in urine by two brands of deferoxamine( Desfonak® and Desferal® ) in major Thalassemia patients, P. Eshghi
OP14. Quality of Life
12:18-12:30
  • Growing Up With Thalassemia Major: Vocational and Social Achievements, K. Belhoul
  • Quality of Life in Adult Patients with Thalassemia Major: A Single Centre Experience, M. Ali
OP15. Thalassemia Intermedia
12:30 – 13:00
  • Utility of the multivariate approach in predicting the â-thalassemia intermedia or major types in Iranian patients, M. Banan
  • Beta-Thalassemia Intermedia in Dubai: Molecular Genetics and Clinical Phenotype, M.S. Eldin
  • Genetic Prognosticator for management of beta Thalassaemia patients without blood transfusion, S. Hussain Ansari
  • Molecular Analysis of Beta Thalassaemia Intermedia in Sri Lanka, S. Perera
13:00-14:00 Lunch Satellite Symposium By Novartis  (13:00-13:45hrs)
Room A
E3. Non-Transfusion Dependent Thalassaemias(NTDTs) – Chairs :  A. Taher / D. J. Weatherall
14:00-14:20 The Definition and Epidemiology of NTDT – D. J. Weatherall
14:20-14:40 Iron Overload in NTDT: A Clinical Perspective – A. Taher
14:40-15:00 Treatment Challenges In Patients with NTDT- J. Porter
15:00-15:20 Non-Transfusion Dependent Thalassaemias Severity Score Index –  M.D. Cappellini
15:20-15:40 Thromboembolism in NTDTs – M. Karimi
15:40-16:00 Questions and Answers / Panel Discussion
Room B
E4. CLINICALLY  SIGNIFICANT  HAEMOGLOBIN VARIANTS – Chairs: H. Wajcman / S.Fucharoen
14:00-14:20 Overview of  Haemoglobin Variants – H. Wajcman
14:20-14:40 Clinical Relevance of Common Abnormal Haemoglobin Interactions-S. Fucharoen
14:40-15:00 Molecular Characterization of Haemoglobinopathies- C.L. Harteveld
15:00-15:30 Questions and Answers / Panel Discussion
OP1. Abstract Session HB Variance
15:30-16:00
  • Misdiagnosis of Hb D-Punjab/â-thalassemia is a potential pitfall in hemoglobinopathy screening programs: a case report, M. L. Bakir
  • ACE-536 Mitigates Ineffective Erythropoiesis and Corrects Anemia in beta-thalassemia, R. Kumar
  • Non-invasive Prenatal Diagnosis of Sickle Cell Disease by Massively Parallel Amplicon Sequencing, S. Henderson
Capital Suite 5
OP16. Endocrine Complications and Fertility
14:00-14:30
  • The relationship of chelation therapy and sera levels of parathormone and osteocalcin and bone density in thalassemia major in east delta of Egypt, U. El safy
  • Acute Effects of Blood transfusion on Pituitary Gonadal Axis and Sperm Parameters in Young Males with Sickle Cell Disease (SCD);A Pilot Study, M. Yassin
  • Acute Effects of Blood transfusion on Pituitary Gonadal Axis and Sperm Parameters in Adolescents and Young Males with Thalassaemia Major A Pilot Study, M. Yassin
  • Evaluation of glycemic abnormalities in Beta Thalassemia major using Continous glucose monitoring system and oral glucose tolerence test, M. Yassin
  • Effects of the Anti Rank Ligand Denusomab On Beta Thalassemia Major-Induced Osteoporosis, M. Yassin
OP17. Miscellaneous
14:30-15:00
  • An automatic method for myocardial T2* curve fitting in thalassemia patients with severe iron overload, A. Pepe
  • Audit and Re-Audit of Mean Annual Pre-Transfusion Hb Level of Patients with B Thalassemia Major at Dubai Thalassemia Centre, M. L. Bakir
  • Predictors of liver disease in patients with thalassemia, G. Lavranos
  • Evaluation of the s-303 treatment system for processing of red blood cell components for thalassemia major patients, N. Mufti
  • Fludarabine/Treosulfan/Thiotepa/ATG Conditioning Leads to Earlier Engraftment and Higher Donor Chimerism than Busulfan/Cyclophosphamide, and Expands the Donor Pool by Enabling the Use of Mismatched and Unrelated Donors for Transplantation in Haemoglobinopathies., J. de la Fuente
OP18. Sickle Cell Diseases
15:00-16:00
  • Myocardial and hepatic iron overload in sickle/thalassemia patients of Italian origin. A. Pepe
  • Correlation of Acute Chest Syndrome with e-NOS, ARG1 and GSNOR gene polymorphisms in Omani Sickle cell patients, A. Pathare
  • Pulmonary hypertension in sickle cell disease: correlation with serum brain natriuretic peptide concentrations, A. Pathare
  • A Modified Technique of Manual Partial Exchange Transfusion in Sickle Cell Disease, H. Dewedar
  • A Comprehensive Care in Sickle Cell Disease can Improve the Quality of Life Outcomes, S. Al Jaouni
  • Transcranial Doppler and Brain Magentic Resonance Imaging in Sickle Cell Disease Patients with Elevated Fetal Hemoglobn, A. D. Adekile
16:00-16:30 Coffee Break
Room A
16:30-18:00 Satellite Symposium By Apopharma
OP3. Iron Chelation
18:00-18:30
  • Deferasirox reduces iron overload with a manageable safety profile in pediatric patients with non-transfusion-dependent thalassemia (NTDT): Results from the THALASSA study, V. Viprakasit
  • Non-transferrin bound iron revisited: now that its potential toxicity is established, how can its measurement help to guide chelation, V. Berdoukas
  • Pharmacogenetic Evaluation for Clinical Response to Standard Once Daily Dose of a Novel Oral Iron Chelator; Deferasirox in Thai Thalassemia Patients, S. Rodmai
Room B
S1. SOCIAL AND ECONOMIC ASPECTS – Chairs : P. Englezos / M.  Angastiniotis
16:30-16:50 Models of Prevention in Developing Countries: The Challenges-M. Petrou
16:50-17:10 Patient-Centered Services-K. Belhoul
17:10-17:30 Psychological Aspects of Thalassaemia-A.M. Abu Ali
17:30-17:50 Auditing/Evaluating Services for Chronic Diseases- Peer Reviewing – A. Yardumian
17:50-18:10 Questions and Answers / Panel Discussion
OP2. Social Aspects
18:10-18:30
  • Living Beyond Odds: The Educational attainment and Employment Status of Children and Adults with Thalassemia in India, S. Singh
  • Patient Involvement in Building a Thalassemia Self-Management Smartphone Application Using Consensus Methodology with the Aim of Improving Long-term care, K. Taha
  • Predicting Adherence to Iron Chelation Therapy in Thalassaemia and Sickle Cell Disease, K. Anie

DAY 3 – Tuesday, 22 October 2013  
Conference Room A Conference Room B
C1. MONITORING IRON OVERLOAD AND CHELATION – Chairs : J. Wood / D. Pennell  __________ OF1. OPEN FORUM 1 
08:30-08:50 Assessing Liver Iron – T. St Pierre 08:30-09:30 PREGNANCY AND FERTILITY IN THALASSAEMIA –  Chairs :  N. Skordis / A. Al Bahar
08:50-09:10 Assessing Heart Iron – D. Pennell
09:10-09:20 Practical Approaches in Applying MRI in Developing Countries -J. Wood
09:20-09:50 Non-Transferrin Bound Iron and Labile Plasma Iron  in  Transfusional Iron Overload - V Berdoukas 09:30-10:00 D1. DEBATE: IRON CHELATION THERAPY – Moderators: A. Al Zoebi/P.Telfer
After a single attack of neutropenia, deferiprone can be reintroduced – A. Piga / Y. Aydinok
09:50-10:10 Questions and Answers / Panel Discussion
10:10-10:30 OP4. Monitoring Iron Overload

  • Increasing access to cure for thalassemia: review of infectious complications in 88 thalassemia matched-related bone marrow transplants performed without positive pressure room or centralized HEPA filtration, M. El Missiry
  • Heart and Liver Magnetic Resonance Imaging T2* for assessing myocardial and hepatic iron overload in thalassemia major, P. A. Wahidiyat
  • Technology Insight: MRI T2* for tissue iron quantification, T. He
10:00-10:30 Chelation  therapy can be continued when serum ferritin drops below 500 ug/L – Paul Telfer / M. Capellini
10:30-11:00 Coffee Break 10:30-11:00 Coffee Break
C3. BLOOD SAFETY – Chairs  N. Dhingra /  A. Eleftheriou C6. HEART – Chairs :  J. Wood / K. Belhoul
11:00-11:20 National Blood Transfusion Services in Low and High Resource Countries – N. Dhingra (GENEVA) 11:00-11:30 Heart Disease in Thalassaemia Major – M. Walker
11:20-11:50 Emerging and Re-Emerging Concerns in Blood Safety – M. Chudy (GERMANY) 11:30-12:00 Vitamin D Deficiency, Cardiac Iron, and Cardiac Function in Thalassaemia Major – J. Wood
11:50-12:10 Pathogen Inactivation – A. Piga (ITALY) 12:00-12:30 Heart Disease in Thalassaemia intermedia –   A. Aessopos
12:10-12:25 Questions and Answers / Panel Discussion 12:30-12:40 Questions and Answers / Panel Discussion
12:25-12:45 OP5. Blood Safety

  • A novel Procedure for Preparing Pluripotent Haematopietic Stem Cells from Unmoblized Peripheral Blood via a Process of Retrodifferentiation for the Treatment of Hematological Conditions, I.Abuljadayel
  • Reducing Length of Stay for Patients Receiving Chronic Blood Transfusion, S. Darwazeh
  • Human stem cell derived red blood cells for the treatment of Beta Thalassemia Major, J.C. Mountford
12:40-13:00 OP6. Heart

  • Movement abnormalities in the left ventricle of thalassemia major patients, A. Pepe
  • Heart Rate Variability In Patients With Thalassemia Major Without Clinical Involvement Of Cardiovascular System, M. Saravi
13:00-14:00 Lunch Satellite Symposium By Novartis (13:00-13:45 hrs) 13:00-14:00 Lunch Break
E5. PATHOPHYSIOLOGY OF SICKLE CELL DISEASE – Chairs : GR. Serjeant / R. Ware OF2. OPEN FORUM 2
14:00-14:20 Approaches to Prevention of Sickle Cell Disease – GR. Serjeant 14:00-15:00  OSTEOPOROSIS: THERAPEUTIC DILEMMAS – Chairs: N. Skordis / E. Voskaridou / M. Karimi
14:20-14:40 Sickling and Antisickling Agents – Y. Beuzard  OF3. OPEN FORUM 3
14:40-15:00 Disturbed Trans-Membrane Ion Exchange in SCD – L. De Franceschi
15:00-15:20 Abnormal adhesion and cell-cell interactions in SCD – J Elion 15:00-16:00 THE CHALLENGE OF TREATING AND MONITORING DIABETES IN THALASSAEMIA – Chairs: V.De Sanctis / N. Skordis / F. Mustafa
15:20-15:40 Questions and Answers / Panel Discussion
15:40-16:00 OP7. Path of SCD

  • Therapeutic Benefit of Small Molecule inhibitors of MEK in Reducing Sickle Red cell Adhesion and Vaso-Occlusion in vivo, R. Zennadi
  • National Neonatal Screening Program for Sickle and Non-Sickle Hemoglobinopathies In United Arab Emirates, H. Al Hosani
  • Therapeutic Phlebotomy in Children with Sickle Cell Anemia, Stroke, and Iron Overload: The SWiTCH Clinical Trial, B. Aygun
16:00-16:30 Coffee Break 16:00-16:30 Coffee Break
C4. SICKLE CELL DISEASE: CLINICAL IMPLICATIONS – Chairs : M. de Montalebert / L. De Franceschi  E6. FUNDAMENTAL DIAGNOSTICS IN  HAEMOGLOBINOPATHIES – Chairs : I. Mirza  / M. Petrou
16:30-16:50 Current management of children :  neonatal screening, immunizations and complications – M. de Montalebert 16:30-16:50 CBC and Basic Hematology Revisited – M. Salah Eldin
16:50-17:10 CNS complications : screening and management – M. Abboud 16:50-17:10 Molecular Diagnostics in The Region – E. Baysal
17:10-17:30 Clinical research trials, screening in developing countries, hydroxyurea risks and benefits – R. Ware 17:10-17:30 Novels techniques for prenatal diagnosis and PGD In Haemoglobinopathies – M. Kleanthous
17:30-17:40 Questions and Answers / Panel Discussion 17:30-18:00 Questions and Answers / Panel Discussion
17:40-18:30  D2. DEBATE: SCD MANAGEMENT – Moderators: A. Al-Jeffri / M. De Montalebert
HSCT is a better treatment for SCD patients with stroke than HU +/- Transfusion – M. Abboud  /   R. Ware
18:00-18:30 OP8. Fundamental Diagnosis

  • First report of the spectrum of  o-globin gene mutations in Omani subjects, A. Pathare
  • Diagnosis of Unusual Alpha Globin Gene Mutations Using a Novel Molecular Approach, S. Daar
  • Molecular and cellular analysis of three novel á2-globin gene promoter mutations (HBA2:c.-59C>T), (HBA2:c.-81C>A) and (HBA2:c.-91G>A) reveal varying patterns of transcriptional and translational activities, R. Ghassemifar
  • Interference of d-globin genes in the diagnosis of B-thalassemia trait, M. P. Cappabianca

 

 

DAY 4 – Wednesday, 23 October 2013 
C7. LIVER – Chairs : G. Duskeiko / M. D. Cappellini
08:30-08:50 Liver Iron Overload: Monitoring and Management –  P. Brissot
08:50-09:10 Emerging Therapies for HCV / HBV Infections – G. Dusheiko
09:10-09:20 Questions and Answers / Panel Discussion
C8. ENDOCRINOLOGY – Chairs : V. de Sanctis / F. Mustafa
09:20-09:40 Growth in Thalassaemia - V. De Sanctis
09:40-10:00 The Endocrinology of Adult Patient with Thalassaemia – N. Skordis
10:00-10:20 Glucose Metabolism in Thalassaemia – V. De Sanctis
10:20-10:30 Questions and Answers / Panel Discussion
10:30-11:00 Coffee Break
R1. MOLECULAR THERAPEUTICS 1 – Chairs : E. Baysal  / D Loukopoulos
11:00-11:20 Reactivation of HbF synthesis: an overview  - D. Loukopoulos
11:20-11:40 Genetic Studies on Haemoglobin F –  S.L. Thein
11:40-12:00 Fetal haemoglobin: g –gene silencing – Doug Engel
12:00-12:30 Questions and Answers / Panel Discussion
12:30-13:00 OP9. Molecular Therapeutic

  • Decreasing BCL11A levels additively increase HbF production in adult B-thalassemia/HbE erythroblasts, O. Sripichai
  • Experimental insertion of a 2nd TATA binding protein site at the position 73 prior to the translation initiation site significantly compensates the activity loss of the endogenous HBA2 TATA binding protein site, R. Ghassemifar
  • Experimental characterization of transcriptional activator and suppressor elements sites within the á-globin core and proximal promoter region, R. Ghassemifar
  • Restoration of correct splicing of IVS2-654 â-thalassemic pre-mRNA by modified antisense U7 snRNA lentiviral vector, N. Jearawiriyapaisarn
13:00-14:00 Lunch Break
R2. MOLECULAR THERAPEUTICS 2- Chairs: M. Sadelain / J. Vadolas
14:00-14:20 Stem Cell Engineering to Cure Severe Haemoglobinopathies – M. Sadelain
14:20-14:40 Lentiviral Vectors or Foamy Viral Vectors for globin gene therapy – G.  Vassilopoulos
14:40-15:00 Gene Editing – Philip D. Gregory
15:00-15:20 Development of model systems for the investigation of γ-globin gene regulation during erythropoiesis and disease - J. Vadolas
15:20-15:40 Questions and Answers / Panel Discussion
16:00-16:30 Coffee Break
16:30-17:00 CLOSING REMARKS

Program Overview