The clinical management of Cystic Fibrosis (CF) is constantly evolving. The
continuous improvement in survival of CF patients is a result of changes in
the understanding of the pathogenesis of the disease and the development of
new methods and therapies to improve nutrition, mucociliary clearance and
antimicrobial therapy. The comparison of CF populations is therefore essential
for the development of standards for clinical practice.
The attempt to develop a European CF Registry started around 1995 in the Paris
meeting sponsored by the ICF(M)A and hosted by the French CF Association.
However, it was felt that the attempt to construct a large and complex
database was too ambitious at that time. Subsequently there was the Roche
database that produced important and valuable information. However, it was
very expensive to run and closed when the funding stopped. In 2003,
representatives of national registries met to discuss the building of a
European Registry.
In 2006, under the EU Framework 6 initiative, funding for a Europe-wide
registry led by Anil Mehta (Dundee) was awarded as part of the European
Coordination Action for Research in Cystic Fibrosis, EuroCareCF (www.eurocarecf.eu).
The aim is to provide a registry to collect demographic data, and optionally
clinical data for all patients with cystic fibrosis in Europe. We are pleased
to report that EuroCareCF and ECFS are working in close partnership to build
this registry, and are also collaborating with the CF Foundation of the US.
A working group, consisting of representatives from all countries will ensure
that all countries are represented and their views heard. This group will meet
regularly and elect a steering committee to determine the use of the data in
accordance with patient consents.
Please address any questions or comments concerning the above and the European
Registry initiative in general to:
|
Dr Hanne
Vebert Olesen |
Dr
Gita Mehta |
CF Centre Aarhus
Pediatric Dept. A
Aarhus University Hospital
DK-8200 Aarhus N
Denmark |
Project
Manager, European Registry
Ninewells Hospital and Medical School
Maternal & Child Health Sciences
University of Dundee, Dundee DD1 9SY
Scotland, UK |
phone:
+ 45 89 49 55 66
(ask for code 6720) |
phone:
+44 1382 632596 |
|
mobile
+ 45 24 91 54 09; private +45 86 21 31 41 |
|
|
email:
hvo@dadlnet.dk |
email:
g.mehta@dundee.ac.uk |
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