Deliverable D16.4: Report on the ENERCA educational day on sickle cell disease and thalassaemias. Executive summary

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Network of Expert Centres in Rare Anaemias Deliverable: D16.4 Delivery Date: October 2011 Short description: WP3 : National course (UK) This deliverable D16.

1 Deliverable D16.4: Report on the ENERCA educational day on sickle cell disease and thalassaemias Report version: Executive summary Project number: Project Acronym: ENERCA 3 Title: European Reference Network of Expert Centres in Rare Anaemias Deliverable: D16.4 Delivery Date: October 2011 Short description: WP3 : National course (UK) This deliverable D16.4 has been developed under WP3 Education and Training. It aims at reporting the activity : "ENERCA Educational day on sickle cell disease and thalassaemias". The report of this educational day was elaborated by the chairperson, Professor Swee Lay Thein (KCL), one of the WP3 partners. She organised an educational session in England, presenting a course on haemoglobin disorders, including disease pathophysiology, management and emerging diagnostics. This deliverable includes the final report of the day. Responsible partner: CHUM Partners contributed: King s College London (KCL) Made available to: Internal

2 1 PROJECT ENERCA 3 Workpackage 3: Education & training Report on the UK educational day

3 E D U C A T I O N A L D A Y - E D U C A T I O N & T R A I N I N G Sickle cell disease and thalassaemias copyright ENERCA 2011

4 Table of contents Introduction...1 Program...2 Summary on educational day UK...6 Speakers...7 Educational material & EHA -CME accreditation...8 Photo gallery...9 Feedback...10 Acknowledgements...11

5 Chapter 1 Introduction E NERCA Workpackage 3 (WP3) is responsible for the organization of educational activities, among which, 3 European courses on rare anaemia (RA) and National courses. This report gives the details of the organization of one of the National ENERCA educational day held in London in March W P 3 P A R N E R S WP Leader: CHUM Associated partners: ESH KINGS CHC WP3 includes 4 associated partners (WP leader CHUM) and 5 collaborating partners. All the other WPs also contribute to the project educational activities. For this specific course the organizer was KCL (Professor Swee Lay Thein). Other WPs UNIMILANO UKNEQAS ERASME UNISR TIF UULM UMCU Collaborating partners: WHO IUH BRF ITHANET UMFVB 1

6 Chapter 2 Program Organisation T he program of this educational day has been elaborated by the chairpersons, Professor Swee Lay Thein and Dr Leticia Ribeiro, from KCL and CHC respectively, Conference organiser was Mrs Annabelle Kelly (KCL).. C H A I R P E R S O N S E D U C A T I O N A L D A Y U K Swee Lay Thein WP3 - KINGS Leticia Ribeiro. WP3 - CHC 2

7 Place and dates The educational day took place in The James Black Centre, King's College London, Denmark Hill campus (London, UK) in 4 th March Program of the event Friday, 4 March : :50 10:50 11:20 Thalassaemia: pathophysiology and clinical manifestations Prof. Swee Lay Thein (King s College London / King s College Hospital NHS Foundation Trust) Sickle cell disease: pathophysiology and clinical manifestations: Dr David Rees (King s College London / King s College Hospital NHS Foundation Trust) Morbid anatomy of sickle cell disease Prof. Sebastian Lucas (King s College London School of Medicine & St Thomas Hospital) 11:20 11:40 Refreshments 11:40 12:10 Hydroxyurea therapy in haemoglobinopathies Mariane De Montalembert (Hôpital Necker Enfants Malades, Paris) 12:10 12:40 Gene therapy in haemoglobinopathies Giuliana Ferrari (Scientific Institute S.Raffaele, Italy) 12:40 13:10 Laboratory diagnosis: antenatal and newborn screening Chris Lambert (King s College Hospital, London) Leticia Riviera (Centro Hospitalar de Coimbra, Portugal) 13: Lunch 14:00 14:30 DNA diagnostics and prenatal diagnosis Barnaby Clark (King s College Hospital, London) 14:30 15:00 New approaches in DNA diagnostics for haemoglobin disorders Cornelis Harteveld (Leiden University Medical Centre, The Netherlands) 15:00 15:45 Case studies 3

8 Diffusion of the event Announcement of the course was done through different means. Conference website: announcements to past delegates of previous courses, London Deanery, local, national and international colleagues Advertisement on events page, EHA website Poster produced (Figure 1) Diffusion of the course to all ENERCA partners. 4

9 FIGURE 1. POSTER Presentation of the educational day UK 5

10 Chapter 3 Summary on educational day UK Educational day on sickle cell disease and thalassaemias T he Educational day on sickle cell disease and thalassaemias organised by WP3 ENERCA partners Swee Lay Thein (KCL) and Leticia Ribeiro (CHC) took place in The James Black Centre, King's College London, Denmark Hill campus (London, UK) in the 4 th March The aim of the workshop was to provide up-to-date knowledge on haemoglobin disorders, including disease pathophysiology, management and emerging diagnostics to English speaking physicians. 6

11 Chapter 4 Speakers List of speakers Barnaby CLARK King's College Hospital NHS Foundation Trust Mariane de MONTALEMBERT Hôpital Necker "Enfants malades", France Giuliana FERRARI Cornelis HARTEVELD Chris LAMBERT Sebastian LUCAS David REES San Raffaele University Medical School, Italy Leiden University Medical Centre, The Netherlands King's College Hospital NHS Foundation Trust King's College London & St Thomas' Hospital King's College London/King's College Hospital NHS Foundation Trust Leticia RIBEIRO Swee Lay THEIN Centro Hospitalar de Coimbra, Portugal King's College London/King's College Hospital NHS Foundation Trust 7

12 Chapter 5 Educational material & EHA - CME accreditation Educational material used for this educational day included a delegate pack containing presentation handouts. The participants of the course were eligible to receive 4.83 Continuing Medical Education (CME) credit points from the European Hematology Association CME system. 8

13 Chapter 6 Photo gallery Here are presented some photos from moments captured during the event. 9

14 Chapter 7 Feedback Here are related two positive feedbacks from the educational day. The course was fantastic and very useful and was well organised too... compliments to all of you and the speakers Dr. Shruthi Narayan Many thanks. The ENERCA day was fab. The lectures were really interesting and I found pitched at just the right level. The speakers were all easy to understand and concise and informative. The day flowed really well and I could not fault it Lindy Defoe 10

15 Acknowledgements This course was possible thanks to European Commission grant N [Report elaborated by Séverine Cunat, WP3 assistant, using data provided by Professor Swee Lay Thein.] 11

Education & training on rare anaemias: how to improve them? Patricia Aguilar Martinez CHU de Montpellier, FRANCE ENERCA

Education & training on rare anaemias: how to improve them? Patricia Aguilar Martinez CHU de Montpellier, FRANCE ENERCA Education & training on rare anaemias Past and present Medical education on rare