European Cystic Fibrosis Society

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Round Table Topics

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Information on the Round Tables on 11 and 12 June - 07:15-08:15.  There will a maximum of 9 registrations possible for each of the topics below. 

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11 June 2009

12 June 2009
Genetics/Screening Mutation Specific Therapies: what's new?
Leader: E. Kerem (IL)		 Genetic Counseling: Difficulties in new born screening
Leader: E. Bieth (FR)
Objective: The aim of this roundtable is to discuss specific difficulties of the genetic counselling in newborn screening by DNA testing notably when a mild CF mutation such as R117H is identified.
  Modifier Genes - News and Problems
Leader: A. Clément (FR)		 Technology for Genetic Testing
Leader: H. Cuppens (BE) 
Objective: The roundtable will discuss the state of the art in current genetic testing technologies of the CFTR gene, and the challenges ahead with future genetic testing such as the use of (next generation) sequencing technologies.
  Newborn Screening: Equivocal Cases
Leader: K. Southern (UK)
Objective: Newborn screening for CF results in the identification of infants with an equivocal diagnosis.  This roundtable will discuss the further investigation and management of these infants.		  
Microbiology/Antibiotics Optimizing Infection Control in the Hospital
Leader: G. Taccetti (IT)
Objective: The objectives of the roundtable are to underline the pathogens involved, and to sum up how to manage and prevent cross-infections.		 Bacterial Genomics
Leader: E. Mahenthiralingam (UK)
Objective: A number of complete genomes for CF microbial pathogens are now available. These genomes and further resources such as online databases, microarray expression analysis and other post-genomic tools will be highlighted and discussed during the roundtable.
  Treatment of Atypical Mycobacteria
Leader: D. Bilton (UK)
Objective: The objective of this roundtable is to discuss the current treatment approaches for atypical mycobacteria.  In particular we will discuss strategies for treatment of M. abscessus, including both systemic and aerosolised antibiotic therapy.		 MRSA: Do we have to be ready for new emerging Clones? 
Leader: R. Canton (SP)
Objective: To discuss current epidemiology of MRSA bronchial colonization of CF patients as well as treatment options. Potential implication of Panton-Valentine leukocidin producing clones will also be discussed.
    Universal Typing of Bacteria?
Leader: P. Drevinek (CZ) 
Objective: Strain identification becomes increasingly important for CF infection epidemiology. What typing method shall be applied to examine individual pathogens?
Cell Biology/Physiology CFTR in Alveolar Cells
Leader: C. Planes (FR)
Objective: Role of CFTR in the alveolus - Interactions between CFTR and ENaC in Alveolar cells.		 CF Pig
Leader: D. Stoltz (US)
Objective: This roundtable will discuss the development and ongoing studies with the CF Pig.
  Correctors and Potentiators
Leader: L. Galietta (IT)
Objective: Drug-like small molecules are able to overcome the basic defect caused by F508del and other CF mutations in vitro.  The participants will discuss about identification and validation of such molecules for the pharmacotherapy of CF.		 CFTR folding
Leader:  I. Callebaut (FR)
Objective: This roundtable will discuss the recent advances in the knowledge of the 3D structures of ABC transporters, and how these can be exploited for a better understanding of the CFTR functions and dysfunctions caused by mutations, as well as for the development of specific therapeutic tools.
Immunology/Pulmonology Management of Haemoptysis
Leader: H. Heijerman (NL)
Objective: During this roundtable participants will discuss the pathogenesis and treatment, as well as pitfalls in treatment, of haemoptysis in patients with CF.		 Anti-inflammatory Treatment 
Leader: M. Fayon (FR)
Objective: The purpose of this roundtable is to provide clinicians with an update on current practices, challenges and hot issues on the management of airway inflammation in patients with cystic fibrosis.
  Sinus and Upper Airways
Leader: R. Chiron (FR)		 Travel with CF 
Leader: S. Bell (AU)
Objective: This roundtable will explore the issues which may arise for the International traveller with CF including health care preparation and communication, travelling by air, insurance, access to health care overseas, infection issues in travelling, etc.
GI/Nutrition

Probiotics in Cystic Fibrosis
Leader: M. Cipolli (IT)
Objective: Probiotics and Cystic Fibrosis - we will be discussing if there is a potential future for a clinical use

Nutrition and Disordered Eating
Leader: M. Bryon (UK)
Objective: Eating disorders are increasing in the general population and people with CF are considered to be at increased risk of developing disturbed eating behaviour which compromises their health. The aim of this roundtable is to look at the incidence of eating disorders in people with CF, to be able to identify disordered eating and to ensure appropriate treatment intervention.

  Nutritional Assessment in CF
Leader: A. Munck (FR)
Objective: We will focus on the basics of energy balance in CF and on outcome variables used to classify nutritional status in clinical practice.		 Cystic Fibrosis Related Diabetes
Leader: M. Ballmann (DE) 
Objective: When to start  treatment of distrubed glucose metabolism and which drugs should be used? Boths questions will be be addressed in the round table.
  Intestinal Complications in CF
Leader: F. Huet (FR)
Objective: The objective of this roundtable is to describe and discuss the current approach and treatment to distal intestinal obstruction syndrome and constipation in CF.		  
Psychosocial/Nursing

Transition from Child to Adult CF services
Leader: A. Cunha (UK)
Objective: This roundtable will discuss the transition of Cystic Fibrosis patients from child to adult CF care and the relevance in planning a future. Cystic fibrosis patients do not want to be different; they are no different developmentally and have the same goals in life as their peers – how can we help them?

Pain Management Measures
Leader: T. Besier (DE)
Objective: This roundtable will discuss possibilities and specific problems with the assessment and measurement of pain as an important aspect of pain management in patients with CF. 
  Management of CFRD - role of CF Nurse or Diabetes Nurse?
Leader: S. Ockhorst (NL)
Objective: Cystic Fibrosis Related Diabetes is a unique type of diabetes, different from type 1 or 2 diabetes melitus.  Diabetes nurses are generally not familiar with cystic fibrosis.  Should the diabetes nurse be trained in CF care or should the CF nurse be trained in diabetes care?  How can we provide the best care for CF patients with diabetes?		 When is the best time to discuss fertility?
Leader: A. Tsang (CA)
Objective:
1. Who and when to discuss fertility issues?
2. What information should be discussed at different stages of their lives?
    Therapeutic Education
Leader: V. David (FR)
Objective: In this roundtable we will discuss how to organize therapeutic education for children with cystic fibrosis and their family, from diagnosis by neonatal screening to transition to adult care. 
Physiotherapy  Nebulizers, cleaning
Leader: L. Lannefors (SE)
Objective: The quality and the design of the many kinds of nebulizers available on the market vary a lot. We will be discussing what cleaning procedures are recommended, sufficient and possible to adhere to.		 Exercise Prescription
Leader: H. Hebestreit (DE)
Objective: Participants of this roundtable will discuss essentials in exercise counselling including the "motivational" interview, medical considerations and options to exercise for individuals with CF. Individual recommendations will be developed for mildly and severely affected patients
  High Frequency Chest Wall Oscillation
Leader: M. McIlwaine (CA)		 Physiotherapy - when to start in screened infants?
Leader: H. Gauchez (FR)
Objective: This roundtable will discuss the recommendation that we have to start physiotherapy as soon as a diagnosis is confirmed as a means of prediction rather prevention of complications (respiratory or musculoskeletal defect).  We will also discuss the need for not just action but eduction to improve comprehension and compliance of young CF children. 
Epidemiology/Registry Benchmarking and Quality Improvement
Leader: M. Stern (DE)
Objective: Continuous quality improvement in CF can be optimized by the benchmarking technique which is based on learning from the best.  Practical examples and perspectives will be discussed in this roundtable.		 Data Control in Registries
Leader: L. Le Monnier (FR) 
  PortCF Experience in UK
Leader: E. Gunn (UK)
Objective: The aim of this workshop is to discuss the way Port CF is used in the UK, both as a working tool for clinical teams and as a means for reporting annual national outcome measures		  
Clinical Trials/New Therapies  Chest CT protocols and monitoring
Leader: J. Davies (UK)
Objective: To discuss:
a) the role of CT in monitoring lung disease both in the clinical and research setting.
b) the various protocols in use for chest CT in CF with their strengths and limitations.		 Nasal PD: Interpretation of Tracings
Leader: M. Wilschanski (IL)
Objective:  Nasal potential difference measurement is a very tricky test and this includes the interpretation and not just the methodology.  We will examine the various proposals for the definition of a normal and abnormal result including glitches and pitfalls.  Participants are encouraged to bring along their own tracings to the roundtable.
 

Clinical Trial Design: do's and don't's
Leader: H. Tiddens (NL)
Objective: To design a clinical trial in CF is not an easy task.  There are many do's and dont's.  In this roundtable we will have a lively discussion around this subject.  Starting point of this discussion will be a list of do's and dont's that I will hand out and your questions on the subject.

Lung clearance index for beginners
Leader: A. Linblad (SE) 
Objective: To discuss the main principles of the MBW, interpretation and its possible use in a clinical setting.