With this picture, the Competence Network advertised the PAN-study in order to recruit participants. Data from about 20,000 patients were collected across Germany., Kompetenznetz Angeborene Herzfehler © Kompetenznetz Angeborene Herzfehler

Healthcare Research

The PAN-Study

A Nationwide Survey

Scientific name of the study

Prevalence of Congenital Heart Defects in Newborns in Germany

The PAN-study was carried out between 2006 and 2009. It yielded important insights into courses of disease and the early detection of congenital heart disease. Until today, the study serves as a valuable basis for further analyses, as well as representative long-term studies.

A Clear Picture of the Frequency of Single Congenital Heart Defects

The research database of the Competence Network holds data from three complete birth years of patients with congenital heart disease that were born in the years between 2006 and 2009. On the basis of the nationwide survey, drawing a clear picture of the frequency of single congenital heart defects was possible for the first time. Furthermore, the PAN-study facilitated important advancements in the early detection of this underlying disease.

Until today, the data collected serve as an important basis for cohorts and long-term studies.

Institutions and researchers interested in using these data are cordially invited to send a proposal outlining their research project to our headquarters.

Nationwide Participation

In the study by the Competence Network, a prospective data collection starting from July 2006 took place in order to determine the frequency of congenital heart disease in newborns in Germany. For drawing a comprehensive picture of heart malformations in Germany, data were collected completely throughout Germany by departments of pediatric cardiology, pediatrics, as well as private practices of pediatric cardiology from all German federal states.

Advancements in Healthcare

The collection included all children born alive after July 1st, 2006, by parents with German residence at that time. Through donating their data, about 20,000 patients created a valuable basis for important steps in the development of healthcare, as well as for further research in the field of congenital heart disease. The study for instance led researchers to press for including pulse oxymetry screenings in the list of routine postnatal examinations. The measure was made part of the mandatory preventive medical examination for infants, referred to as U1/U2, in January 2017. (TO DO: Link zur Pressemitteilung). The study was directed by principal investigators Professor Hans-Werner Hense, Institut für Epidemiologie und Sozialmedizin, Universitätsklinikum Münster, and Professor Angelika Lindinger, Klinik für Pädiatrische Kardiologie am Universitätsklinikum des Saarlandes statt.

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