Patient Registration Registers

Patient Registration Registers HCFA TEAM February 15, 2023

Patient Registers are useful and valuable tools that contribute to better patient care with the ultimate goal of improving patient health.

Registries collect demographic and clinical data of patients, which are pseudonymised and anonymised. Data collection is done with the consent of the patients or their parents in the case of minor patients. Registering patients in registries is often a prerequisite for participation in clinical trials.

Patients with Cystic Fibrosis (CF) in our country are recorded in two Patient Registers: the The European C.I. Registry (ECFSPR) and the European European EC Fibromatosis Registry (ECCF) and the The European ECFSPF Registry (European ECFSPN Registry) and the National C.I. Registry (European C.I. Registry).

After many efforts in continuous cooperation with the Scientific Committee we managed to for the first time in 2015 the inclusion in the European Cystic Fibrosis Registry of all the Cystic Fibrosis Centres in Greece in Thessaloniki and Athens, with the Cystic Fibrosis Department of the General Hospital “Hippokratio” being the first Department to be included in the Registry since 2010. The inclusion of Greece in the European Registry has increased the prestige, credibility and momentum of our country, while in this way our country contributed to the joint efforts of the European Cystic Fibrosis community to register patients. The data collected by each CF Centre in our country is pseudonymised and sent once a year to the European Cystic Fibrosis Patient Registry (ECFSPR). More information at Information and consent form.

The National Cystic Fibrosis Registry of Greece was established as a priority in 2022 by the Ministry of Health.   It is one of the first patient registries in Greece and is linked to the European Registry of C.I.

European Cystic Fibrosis Registry - ECFSPR

The European Cystic Fibrosis Society Patient Register
ECFSPR (European Cystic Fibrosis Society Patient Registry)
collects pseudonymised demographic and clinical data from more than 52,000 consenting people with Cystic Fibrosis from 40 participating European countries and reflects the reality of the disease across Europe.

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, to improve standards of care, to provide data for epidemiological research and to facilitate public health planning.

Benefits of Greece's participation in the European Cystic Fibrosis Registry
  • Evaluating the effectiveness of various treatments of each CF Centre and comparing them with those of other CF Centres in other countries in Europe and around the world.
  • Assessing which treatments are most useful and whether they improve patient care.
  • Assessment of the epidemiology of the disease, e.g. complications, new infectious strains.
  • Designing future innovative medicines for CF patients.
  • Identifying groups of patients eligible for new treatments, ensuring access to innovative therapies.
  • Apart from the scientific community, the data of the Registry is also used by patient representatives for the planning and documentation of the Association’s positions and demands in order to improve the health and quality of life of patients.