Young patient having an ultrasound examination

Research Makes
Survival Worth
Living.

» New 2021 Corona Special

Heart disease is the most frequent congenital malformation. One child in 100 is born with heart disease. We conduct research to support their life and health. The largest research network on congenital heart disease worldwide involves the collaboration of patients, physicians and investigators.

Funded by:

BMBF

Marc coming from his annual routine follow-up examination, Wolfram Scheible für Nationales Register — Marc coming from his annual routine follow-up examination

Marc, assistant tax consultant, 27 years

“When I was a child, I didn’t like the fact that I wasn’t allowed to do many things. I find life as an adult with congenital heart disease much easier.”

Read Marc’s story

ACHD researcher Prof. Dr. Dr. med. Gerhard-Paul Diller, Nationales Register | UKM — ACHD researcher Prof. Dr. Dr. med. Gerhard-Paul Diller

Prof. Dr. Dr. med. Gerhard-Paul Diller, ACHD Researcher

“Over 50,000 register members donate their data and samples. This is a big act of faith, which places a great responsibility on us.”

Go to "Meet the Researcher"

Prof. Dr. Tanja Rädle-Hurst, ACHD cardiologist, Wolfram Scheible für Nationales Register — Prof. Dr. Tanja Rädle-Hurst, ACHD cardiologist

Prof. Dr. med. Tanja Rädle-Hurst, ACHD cardiologist

“We do our utmost to make sure that our patients reach old age; and that they do so well.”

Interview with the ACHD professor

Current Issues

About our Research Activities

Congenital heart defects belong in specialist hands until old age.

Research Results | Medicine and Healthcare

From 18 please see the ACHD specialist!

Today, it is possible to grow old with a congenital heart defect. Appropriate medical care is crucial. From age 18, ACHD cardiologists should take over the care of the patient, but for many patients this does not happen. A recent analysis of data from the National Registry revealed that this is risky.

To the research result

People with congenital heart defects have an increased risk of endocarditis.

Research Results | Medicine and Healthcare

Endocarditis After Valve Replacement

Endocarditis is one of the major risks associated with congenital heart defects, especially after pulmonary valve replacement. Three factors favor the disease, as shown in a first large study.

To the research result

Mothers with CHD: with specialized care, the risks of pregnancy are lower than previously thought.

Research Results | Love, Sexuality and Pregnancy

Desire to Have Children Despite a CHD?

Having children of your own despite a congenital heart defect? A new study shows that in most cases pregnancy is less dangerous for mother and child than long assumed.

To the research result

A Strong Voice for Hearts

Jan Delay supports our research with a notable message.

“I support independent research that actually benefits those who rely on it to survive. Solidary and collaborative research that overcomes boundaries, also in one’s own mind.” Hats off to you for making this possible by being a Register member and research promoter. I’m happy to see you keeping at it.”

View video message

News From the Competence Network and the Register

Vaccination is the best protection against SARS-CoV-2.

Patients

Vaccinate, Protect, Save Lives

Still no all-clear: the SARS-CoV-2 virus and its variants will be with us for a long time and may require regular vaccination boosters. What do you need to know now about vaccination, the consequences of corona infection, and appropriate protective measures?

To the Corona Special 2022

Prof. Dr. med. Anselm Uebing ist neuer Vorstandsvorsitzender des Kompetenznetz Angeborene Herzfehler.

Meldungen | Personalie

Generationenwechsel am KNAHF

Als neuer Vorstandvorsitzender spricht der Kieler Kinderkardiologe Anselm Uebing für das Kompetenznetz Angeborene Herzfehler und damit für einen der weltweit größten Forschungsverbünde auf diesem Gebiet.

Zur Pressemeldung

We take care of your research infrastructure

Join Our Research

Our Infrastructure for Your Research

The Competence Network provides its infrastructure also for your multicenter research projects. We support you with the setup of registers conforming to patient data protection laws.

Learn more

Dr. h.c. Friede Springer, founding patron of the National Register,

Hello, Are You Involved Yet?

It was a great concern of mine to support the creation of the National Register for Congenital Heart Defects with the Friede Springer Herzstiftung. Since then, more and more patients have been contributing to medical progress by signing up with the Register. “I am impressed by the research that has been achieved to this day at the Competence Network for Congenital Heart Defects and by how many of its results have already been able to be incorporated into the effort to improve healthcare.” There are still many unanswered questions. Each registration, each sponsorship, however small the donation might be, help to promote the urgently needed collaborative research in the field of congenital heart disease. Thus, we are promoting life and the quality of life.

Yours sincerely, Friede Springer

Become a part of our research and funding!

Heart-Explorer Magazine

PD Dr. med. Fabian Kari ist Kinderherzchirurg am Universitäts-Herzzentrum Freiburg-Bad Krozingen.

Herzerforscher - Extra | Interview

Herausforderung komplexe TGA

Was ist eine komplexe TGA? Wie wird sie korrigiert? Und was bedeuten die unterschiedlichen OP-Verfahren langfristig für die Patienten? Darüber haben wir mit dem Kinderherzchirurgen Fabian Kari gesprochen.

To the interview

Keeping distance, wearing a mask, observing sanitary regulations: The coronavirus pandemic has changed our everyday life for an indefinite period of time.

Heart-Explorer Magazine | Gespräch

Coronavirus Pandemic: At-Risk Patients are Concerned

Since the beginning of the coronavirus crisis, we have been living in a state of emergency. What does that mean for adults with congenital heart disease? We talked about this with heart patient Eva Niggemeyer and ACHD specialist Gerhard-Paul Diller.

To the interview

Karla Völlm, Ehrenkonsulin der Westfälischen Wilhelms-Universität, unterstützt mit ihrer „EMAH Stiftung Karla Völlm“ die medizinische Forschung und Versorgung für Erwachsene mit angeborenen Herzfehlern.

Heart-Explorer - Extra | Interview

Die Mäzenin der Herzmedizin

Ohne den Einsatz der „EMAH Stiftung Karla Völlm“ wäre in der Versorgung und Erforschung angeborener Herzfehler vieles nicht möglich. Doch es ist ein Lebenswerk, das immer wieder unter Druck gerät.

Zum Herzerforscher-Extra