Making a request to the German Cystic Fibrosis Registry
Due to the continuous collection of data since 1995, the German Cystic Fibrosis Registry offers a valuable source of information regarding the epidemiology and care of patients with cystic fibrosis in Germany. CF-institutions and also external scientists and companies, have the possibility to request information from the registry to provide answers to research questions.
Request of registry data evaluation
The data collected by the registry can be used to answer research questions as well as questions relating to patient care. You can make a request regarding the evaluation of registry data via the Cystic Fibrosis Institute using the request form.
Registry requests are free of charge for participating CF-institutes, provided that the effort of processing the evaluation is justifiable.
The petitioner will be informed early in the procedure of any costs that may incur. Charges for the evaluation of registry data will be levied for all external petitioners, whereby charges for commercial and non-commercial petitioners will be differentiated.
On principle we only provide aggregated data and no raw data.
Deadline for submission of requests
Requests can be submitted two times a year. The next date for request submissions will be October 15th 2018.
Application forms and related documents
Requests for any type of evaluated data from the German Cystic Fibrosis Registry can only be made with the provided application form.
Please send the completed application form to the following address: registeranfragen(at)muko.info
Please contact us if you have any questions about the procedure or require further information.
You can find an overview of the data collected by the Cystic Fibrosis Registry in the inclusion criteria and variable definitions.
Please note the regulations described in the business, procedure and publication directive.