EUROPEAN REGISTRY OF PATIENTS SUFFERING FROM MUCOSTIC FIBROSIS

The European Cystic Fibrosis Society Patient Registry (https://www.ecfs.eu/) collects demographic and clinical data from people with cystic fibrosis (CF) in Europe according to agreed inclusion and definition criteria. The information is used to measure, study and compare aspects of CF and its treatment in participating countries, to deepen our understanding of CF, improve standards of care, provide data for epidemiological studies and facilitate public health planning.

The Registry database includes data from more than 54,000 people with CF from 40 participating countries, as well as longitudinal data from 2008 to 2024. This is a unique resource that shows the real CF situation in Europe.

Why is ECFSPR needed?

Cystic fibrosis is a rare disease. In order to get reliable data about cystic fibrosis, you need as much information as possible. The collected data will help to better study the disease, determine new European standards of medical care, conduct research, and inform society about further steps in health care.

Patient register of the European Cystic Fibrosis Association

Collects, measures and compares information on children and adults with cystic fibrosis who live in Europe and neighboring countries and agree to provide information to the registry. The collected information is used to improve the health and well-being of people with cystic fibrosis.

How can I use the information in the registry?

ECFSPR publishes: annual information reports with demographic and clinical outcomes from across Europe and brief reports with key information on cystic fibrosis in Europe. These reports are valuable tools for:

• local patient organizations to discuss ways to improve cystic fibrosis care in your country with national health structures and other stakeholders.
• comparison of cystic fibrosis center/centers with other countries and identification of areas for their improvement
• discussing your results with your doctor.

What data is collected?

• year / month of birth, gender
• genotype, symptoms at diagnosis
• lung function, weight, height, types of infections, treatment, some complications

The data is non-personalized and stored in a secure database. We adhere to defined principles for data processing, under the control of a committee of experts.

How can I become a member of ECFSPR?

Contact your local cystic fibrosis center. If the center participates in the ECFSPR, you should already be included if you have signed your consent. If the cystic fibrosis center does not participate, contact your doctor and ask them to contact us.