Co-Coordinator:

Prof Isabelle Sermet (Paris)

Co-Coordinator:

Dr Nicoletta Pedemonte (Genoa)

Institut Necker-Enfants Malades (Paris):

Dr Iwona Pranke

Medical Genetics Unit of the Giannina Gaslini Institute, Genova:

Dr Valeria Capurro

Dr Emanuela Pesce

ECFS-CTN Liaison:

Dr Kate Hill (ECFS-CTN)

 

   

The working group is composed of representatives from several European countries and includes patient and caregiver representatives.

Meeting Reports

Meeting Report: - ECFS CTN Theranostics Working Group Meeting Milan Thursday 5th June 2025

Annual Reports

Annual report 2025

Annual report 2024

MEMBERS

Isabelle Sermet (FR)
Nicoletta Pedemonte (IT)
Kate Hill (IRL)
Iwona Pranke (FR)
Frauke Stanke (DE)
Anna-Maria Dittrich (DE)
Mark Jaboerck (DE)
Ruth Olmer (DE)
Silke van Koningsbruggen (DE)
Jan Thomasen (DE)
Luis Galietta (IT)
Margarida Amaral (PT)
Simon Graeber (DE)
Victoria Heimel (DE)
Joerg Grosse-Onnebrink (DE)
Michaela Schedel (DE)
Violeta Railean (DE)
Emanuela Pesce (IT)
Valeria Capurro (IT)
Sivagurunathan Sutharsan (DE)
Shafagh Waters (AU)
Anita Balazs (DE)
Eva Furstova (CZ)
Steffi Tamm (DE)
Didem Erden (TR)
Magda Postek (PL)
Lena Keufgens (DE)
Ayberk Mustafaoglu (TR)
Lucie Dohalska (CZ)
Marien Houtman (NL)


Aims and objectives

Long term aims of the working group:

  • Founded in June 2023, the Theranostics Working group’s key aim has been the training and certification of ECFS-CTN site staff in collection, cultivation and analysis of human Nasal Epithelial Cells (hNECs). Training began in 2024 at Isabelle Sermet’s Paris-based lab and Nicoletta Pedemonte’s Genoa-based lab and has successfully continued into 2026, with 9 staff certified from sites in Germany, Czechia, Poland, Turkey and the Netherlands.
  • A further aim of the Working Group is the qualification of hNECs as a predictive biomarker to determine response of rare CFTR mutations to existing/novel CFTRm by preassessment in vitro – ongoing 2025 into 2026.
  • A further aim of the Working Group is standardisation of primary airway (nasal and bronchial) epithelial cell sampling, culture, evaluation and biobanking. Standardisation is needed across our multiple CF centres as there is considerable heterogeneity despite our new central SOPs. There is variability in terms of technique, equipment and media used. Cell brushing, transport, media of cell expansion and re-differentiation, freezing media and coating of inserts all vary in practice. The purpose of the Working Group is to facilitate sharing of best practice and harmonisation across centres to promote the applications of this timely technique and to facilitate access for patients to CFTRm all over Europe.