[Translational healthcare research : Show what is-Angela Zink, the grande dame of public health research in rheumatology]

Abstract

Background: As director of the program area epidemiology and health care research at the German Rheumatism Research Center, Angela Zink established the German National Database, a national register for the care of people with inflammatory rheumatic diseases and other important registers for public health research in rheumatology.

Objective: This publication summarizes Angela Zink's life work and sheds light on the national significance of this extraordinary achievement from the background of the research results achieved.

Material and methods: The available literature and personal memories of the author formed the basis of this summary.

Results: The German National Database, which regularly collects data from more than 15,000 patients with inflammatory rheumatic diseases per year, shows that the prognosis has steadily improved in many areas, disease activity has decreased, the burden of illness due to pain or functional limitations has decreased, the incidence of incapacity for work and early retirement has decreased and those affected can nowadays participate to a much greater extent in social and working life; however, the data also revealed existing shortcomings, regional differences and differences between treatment by specialists or general practitioners. This made the database a central instrument of quality assurance. The biologics register RABBIT, in which side effects of biologics were registered and used for risk management, has also gained great importance.

Conclusion: The registers which were set up and systematically developed in the program area epidemiology under the leadership of Angela Zink, are a treasure trove of national importance. A continuation, even after the retirement of Angela Zink from active professional life, seems urgently necessary if the healthcare research of German rheumatology does not want to lose the international connection.

Keywords: Core documentation; Inflammatory rheumatic diseases; National register; Quality assurance; Quality management.