The European Cystic Fibrosis Society (ECFS) with its mission to improve survival and quality of life for people with CF strongly supports professional and educational activities that help improving the CF care in every European country. The ECFS patient registry output data show considerable discrepancy in clinical outcomes across Europe and to address this issue, the ECFS proposes the project of a long-term site-to-site partnership where one CF site guides, advises and helps another CF site to optimise the care for CF patients.
Results from the first call for applications ECFS European Twinning Project
A total of 10 applications were received from mentee sites and 27 applications from mentor sites.
The Twinning Evaluation Board assigned pairs amongst new sites and also confirmed several existing partnerships that were already set up before the call. The selection criteria consisted of: linking paediatric, adults or mixed sites together and linking the expertise of mentor sites with needs from mentee sites.
The programme is based on exchange of knowledge and experience where shared visits to both CF sites is fundamental. Due to the current travel restrictions the deadlines for first reports will be of course adapted.
We are pleased to list hereunder the sites that will participate to the project:
| Mentee | Mentor |
| Bucharest, Romania | Leuven, Belgium |
| Cluj-Napoca, Romania | Brussels, Belgium |
| Lviv, Ukraine | London Brompton, UK |
| Odessa, Ukraine | Lyon, France |
| Zaporizhzhia, Ukraine | Jerusalem, Israel |
Pre-existing pairs having applied together:
| Varna, Bulgaria | Southampton Paediatric, UK |
| Athens, Greece | Southampton Adult, UK |
| Thessaloniki, Greece | Southampton Adult, UK |
| Kozle, North Macedonia | Cambridge, Adult, UK |
AIM AND DESCRIPTION OF THE PROJECT
The aim of the project is to address the challenge of clinical outcome discrepancy across Europe through the twinning of two sites. The ambition is to build up a long-term collaborative partnership between Mentor and Mentee sites and address specific needs of the mentee site to optimise patients' clinical outcomes.
The Mentor site will be a well-established CF centre with state-of-the-art expertise in CF care. In the initial phase of the project, mentor sites will be selected amongst the ECFS CTN sites as they have already been assessed by ECFS.
The Mentee site can be any CF care providing establishment which expresses an interest in participating in the Twinning project and is open to the guidance offered by the Mentor site.
It is expected of the twinning pair to organize at least one visit to the mentee site within the first 6 months of the project. The visit will include a CF physician and possibly a CF nurse and/or other CF team members. The aim of the visit will be to establish a partnership, to get an overview of the mentee site, to discuss unmet needs and opportunities. A summary report from this visit with a clear action plan is to be drafted by both sites and will serve as basis for the continuation of the funding.
GRANT DURATION
The twinning pair will be initially funded for six months.
Upon the review of the summary report, the grant and financial support can be extended by one year. The pair has the option to submit summary reports every year and thus, to ask for yearly funding repeatedly. If approved by the ECFS Board, this will entitle the participants to get longer-term funding.