The CF unit and department of the Sismanoglio and Ag. Sofia hospitals are ready to proceed with the European Registry of adults and children with CF respectively.

European Registry of patients with Cystic Fibrosis at the Sismanoglio and Ag. Sofia hospitals

“The president of the Hellenic Cystic Fibrosis Association, Mr. D. Kontopidis at the CF-Europe workshops concerning the European Registry and the goals of each country during last year’s European CF-Conference in Sweden, 8th -13th June 2014.”

The CF unit and department of the Sismanoglio and Ag. Sofia hospitals are ready to proceed with the European Registry of adults and children with CF respectively. Thanks to the constant pressure from the Hellenic Cystic Fibrosis Association and the cooperation with the institutions in charge, the relevant permission was granted by the Hellenic Data Protection Authority on the 20th of May 2015 (file number 1232-22/5/2015). During the European CF-Conference, which will soon take place in Brussels on the 10th – 13th of June, a specialized seminar will be offered, while the ECFSPR Executive Coordinator of the Registry, Mrs. J. Van Rens will meet with the Greek doctors, who will implement this seminar.

The registry of the patients is not only a very important aid for the doctors during the cure of patients, but also a prerequisite for the participation of patients in clinical cures. This development is of great importance especially at times like these, when certain combinations of innovative medicines, which target specific mutations, are expected. Moreover it influences the planning of an early budget by the Institute of Pharmaceutical Research & Technology for the import and distribution of medicines that cost many thousands of euros each month. It must be noted that patients from specialized clinics abroad, e.g. in Southampton, participated in the 2nd and 3rd stage of the clinical research concerning the above mentioned medicines and achieved a great improvement of the respiratory function, long before these medicines became available to the public.

“The presentation of the new platform for the European Registry at the Greek CF-Conference in June 2014 in Thessaloniki in the presence of the president of the ECFS, Prof. Dr Kris De Boeck, the ECFSPR Executive Coordinator of the Registry, Mrs. J. Van Rens, the doctors Mrs. I. Tsanaka and E. Hatziagorou from Ipokratio hospital, Mr. I. Kioumis and Mrs. K. Manika from Papanikolaou hospital, Mrs. T. Papageorgakopoulos from Sismanoglio hospital, Mr. K. Douros from Attikon hospital, Mr. M. Anthrakopoulos from PNP hospital and our representatives of the  Hellenic Cystic Fibrosis Association, Mr. D. Kontopidis and G. Spinos.”

Our efforts have been intensified a year ago, after the President of the European Cystic Fibrosis Society, Prof K. De Boeck and the ECFSPR Executive Coordinator of the Registry, Mrs. J. Van Rens herself have been invited to the Greek CF-Conference in June 2014 in Thessaloniki. During the conference the presentation of the new platform took also place, while our doctors have been clarified about the necessary preparations.

“Mr. Dimitris Kontopidis introducing the ECFSPR Executive Coordinator of the Registry, Mrs. J. Van Rens to Mr. Kaditis during a specialized seminar for the presentation of the new European Registry platform at the European CF-Conference in June 2014 in Sweden.”

During the European CF-Conference, which took place last June in Sweden, the participants discussed the necessity of lobbyism by the patients’ associations, aiming at the institutions in charge. Additionally the doctor A. Kaditis, assistant professor of Pediatrics and Pediatric Pulmonology at the University of Athens met with the ECFSPR Executive Coordinator of the Registry, Mrs. J. Van Rens. Mr. Kaditis addressed the issue of the patients’ registry, referring to the necessity of lobbyism by the patients’ associations, aiming at the institutions in charge and to the preparation of the necessary documents for the Ag. Sofia hospital.

“At the press conference during the European CF Awareness Week 2014 in the presence of the Greek Deputy Minister of Health, Mr. L. Grigorakos, when the administration of the Ag. Sofia hospital agreed to participate in the European Registry (in the presence of Mr. I. Iglezos and the president of the Hellenic Cystic Fibrosis Association, Mr. D. Kontopidis).”

Last November during the press conference concerning the European CF Awareness Week 2015 the deputy administrator of the Ag. Sofia hospital, Mrs. P. Leonardou agreed on behalf of the hospital administrator, Mr. E. Papasavvas, who supported our common cause, to promote the necessary procedures. On the same week the procedures in Sismanoglio hospital have been intensified by the administrator of the CF Unit, Mr. I. Iglezos. With the help of the hospital administrator, Mrs. D. Tsagdi and the meaningful contribution of the administrator of the Quality Control, Research and Continuing Education Department of the hospital, Mrs. M. Eglezopoulou we have reached the current positive results.

The Hellenic Data Protection Authority basically gave its permission for the initialization of the European Registry.

We believe that during the time period after the announcement of the last guidelines given at the European CF-Conference (8th -13th of June 2015 in Brussels) the majority of the patients that are currently monitored in Athens will be registered. Until now only the patients monitored in the CF clinics in Thessaloniki under the responsibility of Mrs. E. Hatziagorou, lector of Pediatric Pulmonology at the Ippokratio hospital and in charge of the scientific society organizing the European Registry in Greece have participated in the European Registry.