The Cystic Fibrosis Association in Finland thanks the health care professionals at HUS (Helsinki University Hospital) committed to the CF registry project and also thanks all the patients who have wanted to participate in developing CF care in Finland in this way by allowing their data to be part of the registry. The Finnish patient data was first transferred to the registry in the first quarter of 2022. Participating in the European Patient Registry makes it possible to analyse the Finnish patient data as part in a larger entity in order to improve outcomes of treatment and to advance scientific research.
Finland finally being one of the contributing countries to the European registry (European Cystic Fibrosis Society Patient Registry/ ECFSPR), we – the Finnish people with CF and their closest/families – are setting our future hopes to equal opportunities of being involved in international medical research as well as to a more rapid access to novel, more effective treatments to all people with CF in Finland.
The Finnish CF Association requested a Non-IME Grant from Vertex Pharmaceuticals Ltd to enable the CF registry project. The Finnish CF Association donated the support as a grant to the collection and transfer of the patient data.
In addition, we were advised, supported and encouraged not only by our European umbrella organisation Cystic Fibrosis Europe (CFE) but also by the European Cystic Fibrosis Society Patient Registry (ECFSPR).
At this stage we rejoice in the fact that one of the original big goals ever since the founding of our association in 2011 has finally seen the light of day.