FAQs

The ECFS Patient Registry is a project of the European Cystic Fibrosis Society.  The ECFS is an international community of scientific and clinical professionals committed to improving survival and quality of life for people with CF by promoting high quality research, education and care.  The Patient Registry is unique database containing demographic, diagnostic and clinical data about more than 55,000 people with CF from 46 countries in the World Health Organisation (WHO) European region and, in a new project that started in 2025, from an additional 15 countries in other parts of the world. You can read more about the ECFSPR Partnership Project outside of Europe  here.

Any CF centre or clinic / country in the Who European Region that satisfies essential privacy and ethical requirements can join the Registry and send us data.

Do you have CF? Ask your doctor if your centre is already in the Registry. If not, we warmly invite them to get in touch with the Registry Operations Manager after reading the information here.

If your centre is in the Registry, you (if you are a minor, your parent/s or legal guardian/s) should have been asked to sign a form to allow your data to be included in the Registry. Participation is completely voluntary and you can say no or change your mind at any time. Check with your doctor. You can also find a list of the countries and centres that participate in the Registry at the end of the latest ECFS Patient Registry annual report.

We collect some demographical data (country of residence, month and year of birth, sex, ethnicity), data about diagnosis, including genotyping information, and some clinical data (types of medication, lung function, nutrition, infections, time in hospital, complications, organ transplant). The data we publish information about are annual i.e. if a particular medication was prescribed during the previous year, or if a person had a certain complication during the year. Sometimes we add a new question in response to how CF and the people with CF evolve. You can find a full list of the data variables* that we currently collect here.

*data variable = a question or reference to information, a characteristic, number, or quantity that can be measured or counted.

The data we collect are used for many things: to help understand different aspects of the disease; to monitor and demonstrate the effect and impact of a specific medication or therapy; to highlight areas – geographical and clinical  - where improvements in CF care can be made; to lobby governments; to contribute to important scientific research.  In short, the data can be used for anything that can lead to an improved quality of life for people with cystic fibrosis.

Our ongoing collaboration with CF Europe and national patient organisations, the top research institutes and scientists and respected organisations and companies, means that the Registry data are used to benefit the community as much as possible. To use the Registry data projects go through a strict review and approval process.  Read more about how this works on the Research Projects section of this website.

Every year we publish highlights and detailed reports based on the data collected the previous year, and every year researchers use the data to carry out studies on different aspects of CF.  The results and articles produced from this research are published in respected scientific journals and can also be found on our website here.

No, we cannot  identify a person from the data sent to us; only the clinician or other authorised medical staff in the centre can do this.  When a person is enrolled in the Registry for the first time a random number is allocated which identifies that person in the data. The CF centre or clinic is also identified by a randomly allocated number and the name of the centre or the person are never sent with the data. You can see more about how the Registry and your centre protect your privacy here and here.

If a country already has an established national CF registry, the data are exported from the national system and uploaded to the ECFS Patient Registry software, ECFSTracker.

If a country does not have a national CF registry, the data are input to ECFSTracker by hand by doctors and other authorised staff from the participating centres.

Data are then sent, safely and securely, from the centre / country to a central database.

The data are stored  on a secure webserver in Germany (Hetzner). Only  authorised personnel have access to the data. Data storage complies with the General Data Protection Regulation (EU) 2016/79 of the European Parliament and of the Council of 27 April 2016 and is approved by the Danish Data Protection Agency, Datatilsynet.

The ECFS Patient Registry guides centres through the processs of applying for the necessery approvals from local and national data protection authorities.  We provide ongoing assistance with the data collection process, from software training to management of the data cycle and we run a data quality programme that highlights areas for improvement in processes and procedures on both sides (providers of data and the Registry).

You can change your mind at any time but we will be sorry if this happens because we believe that by participating in the ECFS Patient Registry you are contributing to a project that benefits many people.  Under the GDPR (EU) 2016/79 you have the right to withdraw your consent without stating a reason. Please tell your doctor if you would like to do this. Your doctor must contact us in writing to inform us about your decision. We will then take the necessary action: your data will be removed from the data collection software and the latest unpublished database and will not be sent to us in the future. It is not possible to exercise your right to change, delete, restrict the processing of data or the right to data portability (i.e. use your data across different services) if the data have already been published.