State of research

Question

Dear expert team,
I am interested, if there are already any studies, that report how may people with CF are in Germany that have been diagnosed late. I mean here at adult age and especially older than 40 years.
Many thanks in advance and best regards,
E. [name removed from Ecorn-CF]

Answer

Dear E.,
In Germany there is a CF register, that lists i.a. the age of diagnosis. About this register, there is an annual report with diverse analyses and statistics. In this report, however, the age of diagnosis is not reported routinely, this however can be done via a special inquiry to the register. Such a special register inquiry can be ordered from any CF center, that is putting data in this register. The expenditure of such a special register inquiry is however inadequately high for an answer of an expert question of ECORN-CF and therefore I am unfortunately no able to give you a precise answer about this on the German CF population.
One can conclude fromthe CFF-anual data report 2013 [US American data], that the diagnosis of CF between the 31st and 40th year of life had been made in about 2% of the registered patients in the year 2013. 72,4% of the registered patients have been diagnosed in the first year of life. You can find the report data on page 23 under the following link:
https://www.cff.org/2013_CFF_Annual_Data_Report_to_the_Center_Directors.pdf

Below you find another link on the latest published report from the German CF register. Probably you find some interesting analyses for you. [page in German]
muko.info/fileadmin/redaktion/datei_gruppen/muko_institut/Qualitaetssicherung_Internet.pdf

I hope that we were able to help you a bit with our answer and ask you for your understanding because of the late answer.

Best regards,
Yours
Dr. med Christina Smaczny

28.01.2016