European Cystic Fibrosis Society (ECFS) Patient Registry Code of Conduct
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European Cystic Fibrosis Society (ECFS) Patient Registry Code of Conduct
What is this about?
The European Cystic Fibrosis Society is an international community of scientific and clinical professionals committed to improving survival and quality of life for people with cystic fibrosis by promoting high quality research, education and care.
Why is this important?
The ECFS Patient Registry collects demographic and clinical data from consenting people with cystic fibrosis in Europe. The information is used to deepen our understanding of cystic fibrosis, improve standards of care, and to facilitate public health planning. This code of conduct details the ways in which the registry should be used.
