How good is the health care provided to patients with congenital heart disease in Germany? Which risks and complications do occur? What is the role of consulting specialized centers? Within the scope of a comprehensive healthcare survey, OptAHF seeks to find answers to these questions.

Ideal care?

Roughly 300,000 children, adolescents and adults require special medical care due to congenital heart disease in Germany alone. Thanks to the advancements in medicine, the group of adults with congenital heart disease has been growing continuously since the seventies. This is great news. However, international studies have shown that patients with congenital heart disease who have not received specialized care suffer a considerately increased risk of premature death due to secondary diseases.

Reduce Risks, Avoid Complications

We therefore urgently require a better understanding of the long-term course of heterogeneous underlying diseases, as well as of the health care that respective patients receive.

What is the kind of care that patients with treated coarctation of the aorta and recurring stenosis (re-coarctation of the aorta) receive?

How can complications and deaths be avoided in patients with severe cardiac defects who require further non-cardiac surgery?

Which problems do women with congenital heart disease face during pregnancy and childbirth? Is a cesarian section required or does it unnecessarily increase the risk for both mother and child?

Research Benefits from Big Data

With OptAHF we try to find answers to these questions. The study is the first comprehensive survey of health care provided to patients with congenital heart disease. Our project is facilitated by digital development. Big Data analyses based on specifically programmed algorithms help us evaluate great amounts of data within short time.

Anonymized data of as much as 2.8 million treatment cases per year, as well as of nine million health-insured persons, will be covered within the scope of our project that is supported by the Federal Office of Statistics and Barmer GEK (a German statutory health insurance provider). For our long-term evaluation, the health insurance company will provide us with anonymized patient data covering a period of ten years.

Register Members Facilitate Research

Sufficient data depth is provided by the National Register, which has set up and maintains a pool of both medical and treatment data that is globally unique. The pseudonymized data donated by over 50,000 patients allow for selecting significant data of patient groups with special characteristics for a matching of data.

This basis for the first time allows us to conduct area-wide surveys to determine potential gaps in the provided health care. In addition, this is the only way to subsequenty define guidelines for improved courses of care.

We would therefore particularly like to thank all patients participating in the National Register. The planned duration of our study is three years until 2021. The project receives funding from the Innovationsfonds (innovation fond) of the German Federal Joint Committee (G-BA). We will keep you updated about the study's results.