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
13:30-17:30  CFE Workshop on Capacity Building
High impact advocacy for CF 
10:00-15:00 ECFS Neonatal Screening Working Group Meeting By invitation only
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
To share current practice on key topics
To promote sharing of best practice
To promote the role of the CF pharmacist
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
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
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
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

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. 

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 
  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 
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

Reducing the negative impact of NBS results to families
Fiona Ulph, University of Manchester, UK

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:
Perkin Elmer
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Physiotherapy Case Presentations
12 June 2013 - 15:00-16:30
Moderators: Penny Agent, London, UK / Fred Lessire, De Haan, Belgium
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 

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
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
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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