NSWG Meetings

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32nd ECFConference, Brest, France

Programme - Wednesday June 10 2009 13:30-16:30
13:30 - Introduction, Progress Report
13:45 - Newborn Screening in Brittany, an historical perspective on the French National Programme - Claude Férec
14:45 - The challenges of implementing newborn screening in Russia - Nataliya Kashirskaya
15:15 - Q&A sesion with panel for those implementing NBS
15:30 - Consensus on the Management of Infancts following NBS - Kevin Southern (on behalf of Isabelle Sermet)

31st ECFConference, Prague, Czech Republic

Wednesday June 11, 2008 12:00-14:10

Carlo Castellani reported on the recent activities of the working group, with particular regard to a Consensus Conference on CF Neonatal Screening. The Conference, "Cystic Fibrosis Neonatal Screening in Europe: Management, Development, Research", took place on March 28-29, at the Garda lake, in Italy.

The meeting was jointly organized by the European Cystic Fibrosis Society, EuroCareCF, the International Society for Neonatal Screening, EuroGenTest, and the European Molecular Genetics Quality Network.

Altogether 36 experts in the field and professionals with an interest in Cystic Fibrosis Neonatal Screening participated in the Consensus Conference.

Topics under discussion were:

  • Effects of early diagnosis on cystic fibrosis clinical outcome
  • Pros and Cons of Cystic Fibrosis Neonatal Screening
  • Costs
  • Sampling, testing, resampling of Immunoreactive Trypsinogen
  • Optimization of Immunoreactive Trypsinogen cut off levels
  • Pancreatitis Associated Protein
  • Mutation analysis testing on Guthrie cards
  • Description of protocols and results
  • Harmonization of protocols 
  • Sweat test
  • Diagnostic criteria for Cystic Fibrosis and CFTR-related disorders
  • Management of carriers
  • Follow-up of infants with Cystic Fibrosis
  • Information on Cystic Fibrosis Neonatal Screening during pregnancy and at birth
  • Information at call for resampling and/or sweat test
  • Information at diagnosis
  • Information for carriers
  • Clinical trials in screened infants
  • Implementation of a collaborative European CF neonatal screening network and funding strategies

The meeting was also an opportunity for an update on current practice of  Cystic Fibrosis Neonatal Screening in Europe.

Following the Conference, future actions have been planned:

  • Production of European Best Practice Guidelines for CF Neonatal Screening, to be submitted to the Journal of Cystic Fibrosis
  • Presentation of the conclusions of the Consensus Conference at the 31st European Cystic Fibrosis Society, Prague 11-14 June 2008 (Saturday June 14th, symposium 19)

Kevin Southern and Isabelle Sermet reported on the progress of the PRP Branch of the Neonatal Screening Working Group.

A modified Delphi method enabled the production of guidelines for the management of infants with an equivocal diagnosis following CF neonatal screening. Input of CF specialists from a wide geographical area provided a clear pathway to a consensus statement.  A core group produced 21 statements, which were modified over a series of three rounds.  A final document of 19 statements was produced, all of which achieved a satisfactory level of consensus.  The statements cover four themes; sweat testing, further assessments and investigations, review arrangements and database. This consensus document is expected to provide guidance to CF specialists with established screening programmes and those who are in the process of implementing newborn screening in their region.

A manuscript named "A European consensus for the evaluation and management of infants with an equivocal diagnosis following newborn screening for Cystic Fibrosis" has been submitted for publication to the Journal of Cystic Fibrosis.

A further study using the modified Delphi method is now in progress, aimed at producing guidelines for the management of infants following neonatal screening. Forty-one statements on the first year of life management of infants identified with CF neonatal screening are going to be evaluated by 94 volunteers. Presently, 47 replies in the round one phase have been collected.

The last part of the meeting was used for discussion on the possible implementation of a collaborative European CF neonatal screening network and on funding strategies. It was agreed to continue this discussion in the next months.

Carlo Castellani announced that he was stepping down as Coordinator of the ECFS Neonatal Screening Working Group after 3 years but would remain Joint Coordinator for one year. Kevin Southern was elected new coordinator by the working group. 

30th ECFConference, Belek Turkey

Friday June 15, 2007

Agenda

  • Cystic Fibrosis Neonatal Screening in Europe Priorities for a Consensus Document
    Carlo Castellani 
    Slide Presentation
  • Towards a consensus on the investigation and management of infants with an equivocal diagnosis following newborn screening for Cystic Fibrosis
    S Mayell et al 
    Poster Presentation
  • Survey of the information provided for parents about newborn screening for CF in European programmes
    Anne Munck et al
    Poster Presentation

29th ECFConference, Copenhagen

Saturday June 17 12.30-14.00, 2006

Agenda

  • Overview of last year's activities
    Carlo Castellani, Italy
    Slide Presentation
  • Information Branch: European survey preliminary results France neonatal screening programme
    Anne Munck, France
  • Positive Results Processing Branch: sweat test, pathway for difficult diagnoses UK neonatal screening programme
    Kevin Southern, UK
    Slide Presentation
  • Outcome Branch: neonatal screening costs evaluation the Netherlands neonatal screening programme
    Jeanette Dankert-Roelse, the Netherlands
    Slide Presentation

28th ECFConference, Crete, Greece

Friday, June 24 12.30-14.00, 2005

Agenda

  • Aims of the working group
  • Results of the European survey on CF neonatal screening practice
  • Presentation of working subgroups and of their fields of interest
    • Lab branch: protocols, IRT, quality assurance
    • PRP (Positive Result Processing) branch: sweat test, diagnostic criteria, borderliners, carriers
    • Outcome branch: clinical follow-up criteria, cost-effectiveness, benefits and drawbacks
    • Information branch: informed consents, information for parents of screened newborns, recalled newborns, affected and carriers
  • Future developments
  • Discussion