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European CF Registry
- Introduction
- Invitation Letter
- Steering Committee
- Guidelines for The European Cystic Fibrosis Registry (ECFR)
- List of patient variables to be collected for Registry including definitions
- Ethics and Patient Confidentiality Issues
- Annual Reports
- Meeting Reports
- Forms and Documents
The purpose of the European CF Registry is to measure, survey and compare aspects of cystic fibrosis and its treatment in the participating countries, thereby encouraging new standards of dealing with the disease, to provide data for epidemiological research and to identify special patient groups suitable for multi-centre trials. The information will facilitate long-term planning of health expenditure allocations and developing pan European support systems.
Link to the ECFS Registry Website
Sponsored by Chiesi S.p.A, the sole pharmaceutical sponsor of the ECFS European CF Registry
Please address any questions or comments about the European CF Registry to Dr. Hanne Olesen
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Dr. Hanne Verbert Olesen
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Linda Foley - Fondly Remembered
It was with great shock and grief that we received notice of Linda Foley’s sudden death on November 9th 2009. Linda was the Chief Executive of the Cystic Fibrosis Registry for Ireland since 2001, and it was in this function that she became involved in the European Cystic Fibrosis Registry from its start in 2003. Linda was an active and valuable member of the ECFS Registry working group being elected to the first ECFR Steering committee at the working group meeting in Amsterdam, December 2006.
Linda had a critical role in advancing the European Cystic Fibrosis Registry project. While others would often get lost in detail, Linda was able to perceive the larger picture. With her bird’s eye view of the registry, she was able to get our committee to focus on the ultimate goals of the registry and direct us in the right direction in her humorous and wise manner. All of us will remember Linda as a warm and caring person, always ready to listen, and ready with either a comforting word or a friendly prod as appropriate. She will be sorely missed as both a professional and as a friend.
Hanne Vebert Olesen
On behalf of the European CF Registry Steering Committee
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