After much effort, the european registry of Cystic Fibrosis patients is underway in Athens, while CF centers at Thessaloniki are already participating since 2007. Our goal is that basic registration will be completed by November, in time for the results to be included in the global country registry of 2015!

After much effort, the european registry of Cystic Fibrosis patients is underway in Athens, while CF centers at Thessaloniki are already participating since 2007. Our goal is that basic registration will be completed by November, in time for the results to be included in the global country registry of 2015!

More on our efforts so far on this link

The patient registry, apart from being a very important tool for doctors, is often a prerequisite for patients participating in clinical trials.

In particular:

Adult patients at Sismanoglio hospital

after communicating with Dr Kotsyfas, will be able to register daily during 10am-1pm. Please contact CF unit’s secretary office for more information (00302132058408).

Children at Agia Sofia hospital

will be in communication with Dr Kaditis and their doctors accordingly.

In more detail:

Registration is annual. Our effort now involves the 2014 registration, and later in January we will focus on 2015, having more time to work on it

Information that is recorded in summary:

Name and surname, date of birth, social security number (so as to avoid double entries)

Date of diagnosis

Genotype or sweat test

2014’s best spirometry’s result with weight and height

Medication

Sputum culture test results

Any secondary conditions such as hemoptysis or diabetes

From the moment this information is registered, data are sent at the european platform anonymously and encrypted

For any enquiry, don’t hesitate to contact us

Click here for consent and participant information

Click here for the consent form