CF Patients’ Registry
European Cystic Fibrosis Society Patient Registry - ECFSPR
Since its founding in 2008, the European Cystic Fibrosis Society Patient Registry (ECFSPR) collects pseudonymized demographic and clinical data from consenting patients in Europe based on agreed inclusion criteria and definitions.
The information is used to measure, research, and compare aspects of Cystic Fibrosis and its treatment in participating countries, to deepen understanding of the disease, improve standards of care, 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.
From 2015, and in collaboration with the Scientific Committee, the Association managed to include 2015 all CF Centers of Greece in the ECFSPR.
It is worth mentioning that the Cystic Fibrosis Unit of “Hippokrateio” Hospital in Thessaloniki was the first Unit to become a member of the European Register since 2010. Data from Greece was incorporated for the first time in the European report of 2014, covering more than 90% of Greek patients with Cystic Fibrosis, and increased the country’s visibility, credibility, and dynamics. The data collected from each CF Unit in Greece is pseudonymised and sent yearly to the European Cystic Fibrosis Society Patient Registry (ECFSPR).
– Evaluation of the effectiveness of various treatment regimens of each CF Center and comparison with counterparts of other CF Centers in other countries in Europe and the whole world.
– Assessment of the most valuable treatments and the improvement of the patient
– Assessment of the epidemiology of the disease, e.g., complications and new infectious strains.
– Designing future innovative drugs for CF patients.
– Identify patient groups eligible for new treatments, ensuring access to innovative therapies.
– The data serves as a ground for claiming better health services and quality of life for the patients.
More information in the Patient Information and Consent Form
The Greek patients are registered in the European Cystic Fibrosis Society Patient Registry (ECFSPR) and the National Cystic Fibrosis Registry. From 2015, and in collaboration with the Scientific Committee, the Association managed to include 2015 all CF Centers of Greece in the ECFSPR. Due to the coordinated and persistent efforts of the Hellenic Cystic Fibrosis Association, 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. Also, the registration of patients in Registries is often a precondition for a patient to participate in clinical treatments.
National Cystic Fibrosis Registry
The National CF Registry was the country’s first Patient Registry, established as a priority in July 2020 as a prerequisite for the completion of the compensation negotiation of innovative CFTR Modulators treatments in Greece.
The National 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 entered as 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 SA – e-Government Center for Social Security Services, and the management and supervision of the Registry is carried out by the Independent Department of Therapeutic Protocols and Patient Registries of the Ministry of Health.
At the same time, patients’ bodies 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.
Finally, the interconnection of the National Registry with the European CF Registry contributes to more effective monitoring, patient care, and better policymaking.
