October 2018 –
Following an exploratory visit to Bulgaria Dr Julian Legg concluded that the most useful improvement in the treatment of CF in the country at the present time would be the development of a register of CF patients. He arranged to meet Dr Lutz Naehrlich, Director of the European Cystic Fibrosis Society Patient Registry at a CF Europe conference in Sofia. The outcome is a plan to hold a two day conference in April 2019, probably in Varna, to establish a National Patient Register. The conference will be attended by representatives from all four CF centres in Bulgaria. It will be part funded by Abbott Laboratories and will be facilitated by our team from Southampton Children’s Hospital. A patent register has wide ranging benefits. As an easily accessed resource, it is an invaluable aid in understanding health outcomes in patients nationwide. It aids communication between health workers in different parts of the country and provides a source of important information for decisions on treatment. Perhaps most importantly it encourages regular routine assessments and record keeping. It could be a step change for the treatment of CF in Bulgaria. More background here.