Registry

German Cystic Fibrosis Registry

Statistics

With 5,500 patients and 95 CF-institutions - the German Cystic Fibrosis Registry makes a strong statement. For over 20 years, medical data from cystic fibrosis patients has been recorded in the registry. Therefore, the registry is an important source of data to answer questions regarding the medical condition and the care of patients in Germany.


Goal

The goal of the Cystic Fibrosis Registry is to establish a basis for the continuous improvement of the quality of treatment for patients with cystic fibrosis through the structured collection and statistical evaluation of the registry data (“quality assurance for cystic fibrosis”). The primary goals are:

  • To record, analyse and improve the care situation of patients with cystic fibrosis in Germany,
  • to provide the collected data as the foundation for healthcare research, development of therapy and to monitor the safety of pharmaceutical medicines,
  • to prepare the registry data for patients and therapists and to portray it in a transparent manner in annually issued reports.

Furthermore, the registry data of participating CF-institutions offers the possibility of internal quality assurance.


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.


Your contact persons

Manuel Burkhart, Deutsches Mukoviszidose-Register

Manuel Burkhart
German Cystic Fibrosis Registry
Tel.: +49 (0)228 98780-46
Email: MBurkhart(at)muko.info


Dr. Sylvia Hafkemeyer, Forschungsförderung / Registerstudien

Dr. Sylvia Hafkemeyer
Research Funding / Registry studies
Tel.: +49 (0)228 98780-42
Email: SHafkemeyer(at)muko.info


Updated: 16.05.2018