Science and Research

Deutsches Mukoviszidose-Register

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 evalua-tion 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.

Study details
DZL Disease Area: CFBE
DZL Disease Area: CFBE
Study Type: Observational
Study Type: Observational
DZL Role: DZL recruiting center
DZL Role: DZL recruiting center
Funding: DZL
Funding: DZL
DZL Participating Sites: TLRC, BREATH, UGMLC
DZL Participating Sites: TLRC, BREATH, UGMLC
Start Date: 01.04.2019
Completion Date: 01.01.2028
Status: Recruiting
Status: Recruiting
DZL recruiting center


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