Page Updated: 23 May 2013
Overview of the pre-conference programme and meetings
| Tuesday 11 June 2013 | ||
| 08:30-17:30 | ECFS Board Meeting | By invitation only |
| Wednesday 12 June 2013 | ||
| 08:30-13:00 | Physiotherapy Short Course Optimising Post-transplant Outcomes for the CF patient- The role of physiotherapy pre- and post-operatively |
Extra registration required |
| 09:00-14:45 | ECFS Exercise Working Group Meeting | By invitation only |
| 09:00-12:00 | CF Pharmacists Meeting | |
| 09:15-16:45 | International Nurse Specialist Group/CF (INSG/CF) Meeting | Extra registration required |
| 09:30-16:00 | European Psychosocial Special Interest Group (EPSIG) Meeting | Extra registration required |
| 09:30-16:15 | European Cystic Fibrosis Nutrition Group Meeting | |
| 08:30-12:00 | Workshop: Implementation of a Brazilian programme for CFTR genotyping | |
| 09:30-12:30 | CFE/ECFS Symposium: Improving access to quality care for adults with CF |
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| 13:30-17:30 | CFE Workshop on Capacity Building High impact advocacy for CF |
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| 10:00-15:00 | ECFS Neonatal Screening Working Group Meeting | By invitation only |
| 08:30-16:30 13:15-17:00 |
ECFS CTN Training and Development ECFS CTN Steering Committee Meeting |
By invitation only |
| 13:15-14:45 | International Physiotherapy Group for Cystic Fibrosis (IPG/CF) - Annual General Meeting | |
| 15:00-16:30 | Physiotherapy Case Presentations | |
| 14:00-17:00 | CF Ageing Group Meeting | |
| 14:00-17:00 | Latin American Network Meeting | |
| 15:00-17:00 | ECFS Patient Registry Executive Committee Meeting | By invitation only |
| 17:00-18:30 | ECFS Patient Registry - Data Quality Control Project Group Meeting | By invitation only |
| 17:00-18:00 | ECFS Annual General Meeting | ECFS Members |
| Thursday 13 June 2013 | ||
| 12:30-14:30 | IMPACTT (IgY) Meeting | By invitation only |
| 12:30-14:30 | ECFS Lung Microbiome Working Group Meeting | By invitation only |
| 12:30-14:30 | ECFS Patient Registry Steering Group Meeting | By invitation only |
| 12:30-14:30 | ECFS CTN Standardisation Committee Meeting | By invitation only |
| 15:00-17:00 | Cystic Fibrosis Trust Meeting - Seizing the new opportunities in cystic fibrosis research | |
| 18:45-19:45 | ECFS Patient Registry Contributors Meeting | |
| Friday 14 June 2013 | ||
| 07:30-08:30 | Journal of Cystic Fibrosis - Editorial Board Meeting | By invitation only |
| 12:30-14:30 | ECFS Diagnostic Network Working Group Meeting | |
| 12:30-14:00 | ECFS Gene Modifier Working Group Meeting | By invitation only |
| Saturday 15 June 2013 | ||
| 09:00-18:00 | CF Family Conference | |
| 13:30-18:00 | ECFS Scientific Committee Meeting - Gothenburg 2014 | By invitation only |
| CF Pharmacists Meeting 12 June 2013 - 09:00-12:00 |
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| To share current practice on key topics To promote sharing of best practice To promote the role of the CF pharmacist |
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| 09:00-09:15 | Welcome and introduction - Amanda Bevan, Southampton, UK |
| 09:15-09:45 | Nebulisation of meropenem and vancomycin - Research report - Amanda Beven, Southampton, UK |
| 09:45-10:15 | The role of the CF pharmacist - Mari Lee-Davies, Penarth, UK |
| 10:15-10:45 | Drug interactions in CF - Clare Cox, Cambridge, UK |
| 10:45-11:00 | Break |
| 11:00-11:45 | Ivacaftor clinical development programme for G551D CF patients - Joe Healy, Rickmansworth, UK |
| 11:45-12:00 | Summary - Amanda Beven, Southampton, UK |
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| Internatioanl Nurse Specialist Group - Cystic Fibrosis (INSG-CF) Annual Meeting 12th June 2013, Lisbon Portugal |
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| 09:15-19:45 | Registration & Coffee |
| 09:45-10:00 | Welcome By Ellen Hunstad, Chair INSG-CF |
| 10:00-11.15 | Plenary Session 1 - Moderator: Vibsen Bregnballe Implications of cystic fibrosis on adolescents and their families By Margarida Custódio, Psychologist, Lisbon, Portugal |
| 11:15-11:30 | Break |
| 11:30-12:30 | Plenary Session 2 - Moderator: Kristine Colpaert |
| 11:30-11:50 | Growing up with cystic fibrosis By Conceiçao Reisinho, Nursing teacher, Porto, Portugal |
| 11:50-12:10 | Transition from pediatric to adult services By Fatima Azambujo, nurse |
| 12:10-12:30 | Therapeutical adherence By Raquel Bolas, nurse |
| 12:30-13:30 | Lunch |
| 13:30-15:00 | Plenary Session 3 - Moderator: Ellen Hunstad |
| 13:30-14:30 | Hope By Zaida Charepa, Professor in Nursing, PhD, Lisbon, Portugal |
| 14:30-15:00 | Living with cystic fibrosis By Maria Beatriz Ferreira, young adult with CF |
| 15:00-15:30 | Break |
| 15:30-16:45 | Annual General Meeting - Moderator: Vibsen Bregnballe |
| National presentations: | |
| 15:30-15:45 | Portugal by Lidia Castro |
| 15:45-16:00 | Brazil by Taniá Pizzignacco |
| 16:00-16:15 | Spain by Silvia Rodriguez Torres |
| 16:15-16:45 | Report from the board of the INSG-CF |
| 16:45 | Close of Annual Nurse Meeting |
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| European Psychosocial Special Interest Group (ESPIG) Meeting 12 June 2013 - 09:30-16:00 |
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| 09:30-09:35 | Welcome |
| 09:35-11:00 | Parents from beginning to transition |
| 11:00-11:15 | Coffee Break |
| 11:15-12:00 | Adolescents into adulthood |
| 12:00-13:30 | Lunch |
| 13:30-14:45 | Adults |
| 14:45-15:00 | Coffee Break |
| 15:00-15:50 | Complex Cases |
| 15:50-16:00 | Closing Remarks |
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| European Cystic Fibrosis Nutrition Group Meeting 12 June 2013 - 09:30-16:00 Moderator: Helen White - Leeds, UK |
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| 09:30-10:00 | Coffee and Registration |
| 10:00-11:00 | Annual General Meeting |
| Original contributions: | |
| 11:00-11:20 | Caloric intakes in children with CF - Willie Woesternenk, Utrecht, NL |
| 11:20-11:40 | Carbohydrate counting and insulin adjustment in cystic fibrosis related diabetes - A pilot cohort study - Lianne Robb, Edinburgh, UK |
| 11:40-12:00 | Team insights into adherence barriers: Learning from diabetes self-management exercise - Ailsa Milne, Sheffield, UK |
| 12:00-12:20 | A 12 month programme using observed consultations and transcript scoring to increase motivational interviewing skills in an adult CF team - Sarah Thornton, Sheffield, UK |
| 12:30-13:30 | Lunch |
| 13:30-14:00 | Nutritional intervention in patients with cystic fibrosis. Presentation of a systematic review - Willie Woestenenk, Utrecht, NL |
| 14:00-14:30 | Evaluation of a novel behavioural intervention programme (BIP) to modify mealtime behaviour in children with cystic fibrosis - Alison Coates, Edinburgh, UK |
| 14:30-15:00 | Break |
| The vitamin debate: | |
| 15:00-15:20 | Vitamin blood levels after introducing multi-vitamin supplementation with AquaAdek in children with cystic fribrosis - Inger Elisbeth Moen, Oslo, NO |
| 15:20-15:40 | Treatment algorithm for vitamin D deficiency - A review a year on - Sejal Pandya, Liverpool, UK |
| 15:40-16:00 | Discussion and close |
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| CFE/ECFS Joint Symposium - Improving access to quality care for adults with CF 12 June 2013 - 09:30-12:30 |
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Organisers: CF Europe and the European Cystic Fibrosis Society have organised a pre-conference meeting in order to strengthen the unique contribution that patient organisations and professionals involved in CF care can make to improving access to quality care for adults with CF around Europe. The meeting is of particular interest to patient organisations, directors and members of the CF care team (physicians and allied health professionals) and people involved in health policy. |
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| 09:30-09:40 | Introduction - Stuart Elborn (UK) / Karleen De Rijcke (BE) |
| 09:40-10:30 | Quality Adult Care |
| European survey on CF adult care: Needs and problems - Karleen De Rijcke (BE) | |
| What's different about adults? - Susan Madge (UK) | |
| What is quality adult care? - Ulrike Pypops (BE) | |
| 10:30-11:00 | CF adult care, through the eye of the "user" |
| Testimony from a "low resource country" - Vitalie Suba (MD) | |
| Expectations from a young adult - Hannelore Penez (BE) | |
| Lessons learned by an "experienced adult" - Birgit Dembski (DE) | |
| 11:00-11:15 | Break |
| 11:15-12:00 | Models of adult care |
| Transition | |
| All together - Carlo Castellani (IT) | |
| Shared care - Helen Rogers (UK) | |
| Adults only - Lieven Dupont (BE) | |
| 12:00-12:30 | Way to go about adult care in Europe: Take home messages |
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| ECFS Neonatal Screening Working Group – Annual Meeting 12 June 2013, 10:00-15:00 |
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| 09:30 | Tea and Coffee |
| Morning Session | Chair: Kevin Southern, University of Liverpool, UK |
| 10:00-10:10 | Welcome to Lisbon - Laura Vilarinho National Institute of Health INSA, Porto, Portugal |
| 10:10-10:15 | Aims of the meeting - Kevin Southern (UK) |
| 10:15-10:40 | Update on progress in Europe - Kevin Southern |
| 10:40-11:05 | The first four years of newborn screening for CF in London and the South-East of England - Dr Ian Balfour-Lynn, Royal Brompton Hospital, London, UK |
| 11:05-11:30 | Consistency in designation (avoiding inappropriate labels) Richard Parad, Harvard Medical School, Boston, USA |
| 11:30-11:55 | Lessons from the Czech Republic Newborn Screening Programme Veronika Krulisova - University Hospital Motol, Prague, Czech Republic |
| 11:55-12:30 |
Reducing the negative impact of NBS results to families |
| 12:30-13:15 | Lunch Break |
| Afternoon Session | Chair: Anne Munck, FDPHE and CF Centre Director, Hôpital Robert Debré, Paris, France |
| 13:15-13:35 | The Challenges of Screening Premature infants for CF Richard Parad - Harvard Medical School, Boston, USA |
| 13:35-14:05 | Improving the performance of NBS programmes: US QI Project Phil Farrell - University of Wisconsin, Madison, USA |
| 14:05-14:30 | Update on the development of IRT PAP protocols across Europe Olaf Sommerburg - Heidelberg University, Germany |
| 14:30-15:00 | Discussion including a debate on safety net (failsafe) strategy |
Meeting supported by: |
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| Physiotherapy Case Presentations 12 June 2013 - 15:00-16:30 Moderators: Penny Agent, London, UK / Fred Lessire, De Haan, Belgium |
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| 15:00-15:15 | Introduction |
| 15:15-15:30 | Physio, fitness, food and the frequent flyer - Sean Ledger, London, UK |
| 15:30-15:45 | Up pain creek without a rib - Louella O'Herlihy - Poole, UK |
| 15:45-16:00 | Self-titration of non invasive ventilation (NIV): "survival instinct"? - Simone Gambazza, Milano, Italy |
| 16:00-16:15 | Managing a patient on non-invasive ventilation (NIV) when they develop a pneumothorax - Sarah Thomas, Cardiff, UK |
| 16:15-16:30 | Use of mechanical insufflation-exsufflation in the management of a cystic fibrosis patient - Emma Forster, Bristol, UK |
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| CF Ageing Group Meeting 12 June 2013 - 14:00-17:00 |
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The International Study into Ageing in CF Meeting will be chaired by Prof. John Dodge and Dr. James Yankansas. Presentations and discussion will be made on the questionnaires for the ISAC Study, the Cancer Study and also the Gene Modifier Stuady. This is an open meeting and all are welcome to attend. |
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| ECFS Patient Registry Contributors Meeting 13 June 2013 - 18:45-19:45 Moderator: Hanne Olesen, Arhus, Denmark |
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| The meeting is open for anyone with an interest in the ECFS Patient Registry. It is an informative meeting for potential contributors, persons with an interest in obtaining data for research and other interested parties. | |
| 18:45-19:00 | Introduction ECFS Patient Registry - Edward McKone, Dublin, Ireland |
| 19:00-19:10 | A patient's view - Ulrike Pypops, Brussels, Belgium |
| 19:10-19:20 | The annual report and centre report: Useful tools - Anna Zolin, Milan, Italy |
| 19:20-19:30 | How to request data for research - Jacqui van Rens, Leuven, Belgium |
| 19:30-19:40 | How to set-up a (national) Patient Registry - Andreas Jung, Zürich, Switzerland |
| 19:40-19:45 | Questions and Answers |
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| ECFS Diagnostic Network Working Group Meeting 14 June 12:30-14:40, Auditorium III & IV (Level 1) Moderator: Nico Derichs, Berlin, Germany |
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| 12:30-12:35 | Introduction Nico Derichs, Berlin, Germany |
| 12:35-12:45 | Results from DNWG CF diagnosis registry project Kris De Boeck, Leuven, Belgium |
| 12:45-13:10 | Sweat Test: Short presentation of Best Posters Moderation: Kevin Souther, Liverpool, UK |
| 13:10-13:20 | NPD: needle vs. abrasion - blinded comparison study Elke De Wachter, Brussels, Belgium |
| 13:20-13:30 | ECFS NPD SOP diagnostic validation Isabelle Sermet, Paris, France |
| 13:30-13:35 | CFTR3: Scenario for European database on rare mutations Nico Derichs, Berlin, Germany |
| 13:35-13:40 | Diagnostic Webforum: Kick off ceremony Inez Bronzveld, Utrecht, Netherlands |
| 13:40-14:20 | Challenge the experts: CF Diagnostic Cases from Portugal & Participants |
| 14:20-14:30 | Next meetings. Discussion |
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