CF Patients’ Registry HCFA-TEAM February 15, 2023

CF Patients’ Registry

European Cystic Fibrosis Society Patients Registry - ECFSPR

The European Cystic Fibrosis Society Patient Registry (ECFSPR) was established in 2008 and  collects pseudonymized demographic and clinical data from CF patients in Europe after their consensus. The information is used to measure, research and compare aspects of CF and the treatments in participating countries, to improve the understanding of the disease, the standards of care and to provide data for epidemiological research and facilitate public health planning. The European Registry database includes data from more than 52,000 people with Cystic Fibrosis from 40 participating European countries and reflects the reality of the disease across Europe.

Since 2015 in collaboration with the Scientific Committee, the Association managed to include all Greek CF Centers in the ECFSPR. CF children center of “Hippokrateio” Hospital in Thessaloniki was the first greek center which became a member of the ECFSPR in 2010. Data from Greece was included for the first time in the ECFSPR in 2014, representing more than 90% of Greek CF patients, increasing our country’s visibility, credibility, and dynamics. The data collected from each Greek CF center is pseudonymised and updated once a year in the ECFSPR.

More information in the Patients Consent Form

  • Evaluation of the effectiveness of various treatment of each CF Center and comparison with counterparts of other European CF Centers.
  • Assessment of the most valuable treatments and the improvement of the patient.
  • Assessment of the epidemiology of the disease, e.g., complications and new infections.
  • Designing innovative treatments for CF patients.
  • Identify patient groups eligible for new treatments, ensuring access to innovative therapies.
  • The data helps claiming better health services and quality of life for CF patients.

CF patients in Greece are registered in the European Cystic Fibrosis Society Patient Registry (ECFSPR) and in the National Greek Cystic Fibrosis Registry. From 2015, and in collaboration with the Scientific Committee, the Association managed to include 2015 all Greek CF Centers in the ECFSPR. The Greek National Cystic Fibrosis Registry was established in 2020.

Cystic Fibrosis Patient Registries are valuable tools. They collect patient demographic and clinical data with the patient’s consent. The data are pseudonymized and anonymous and serve for assessments, research, and comparison of the disease and specific treatments, to deepen doctors’ understanding of the disease, improve standards of care, provide data for the epidemiological study, and facilitate public health planning.

The registration of patients in Registries is often necessary for participating in clinical trials.

Greek Cystic Fibrosis Patients Registry

The National Greek CF Registry was the country’s first Patient Registry, established from Greek Ministry of Health in July 2020.

The Greek Cystic Fibrosis Registry is a valuable tool and guide for informed decisions, effective and efficient research,and a strategy to maximize the benefits of interventions in our patients’ treatment, prevention, and care.

The data are in form of pseudonymized or anonymized information, and no direct or indirect identification of the patients can be derived.

Competent authority for processing and storing patient data is IDIKA. The management and supervision of the Registry is carried out by the Independent Department of Therapeutic Protocols and Patient Registries of the Greek Ministry of Health.

At the same time, patients can participate in the research as accredited Users of Statistical Information and have access only to Statistical Information. This feature promotes patients’ empowerment and advancements in research.

The connection of the National Greek CF Registry with the European CF Patients Registry contributes to more effective monitoring, care, and better policymaking.