The International Prenatal Cardiology Collaboration Group – a new concept for global research study

Congenital heart defects are among the most common congenital defects and contribute substantially to the mortality of newborns and young infants, in spite of well-developed medical and surgical treatments. It is estimated that the mortality of children with congenital heart defects in developing countries is as high as 20%, whereas the incidence of congenital heart defects is approximately 1/100 live births⁽¹⁾. Currently, there is an emphasis on early fetal screening for chromosomal abnormalities and neural tube defects, despite the fact that congenital heart defects are four times more frequent than chromosomal abnormalities and six times more frequent than neural tube defects⁽²⁾. It should be noted that basic in-utero screening for heart defects is possible as early as the first trimester, which in some cases prompts further work-up and treatment⁽³⁾. Throughout the world, second trimester screening remains the mainstay of prenatal diagnosis of cardiac anomalies. However, a comprehensive work-up for fetal heart defects can be associated with substantial psychological burden on the mother and her family. Moreover, the prevalence of misdiagnosis can be as high as 36%, thus prompting the need for further training and multidisciplinary team work⁽⁴⁾. Furthermore, 33% of heart defects are accompanied by other anomalies⁽⁵⁾.

In 2006, the Polish Ministry of Health established a Register of Fetal Heart Defects (RFHD). The aim of this initiative was to enable cooperative gathering of data on fetal heart diseases, such as heart defects, significant cardiac arrhythmias, heart failure, heart ectopy and other significant heart conditions. RFHD is an internet database where the user can attach images, movies and other information to a given patient's file. Proofreading is performed by pediatric cardiologists from level C institutions – those that register at least 100 cases of heart defects annually. The data gathered so far have shown that heart defects are the weakest link in prenatal diagnosis. However, as physicians performing prenatal screening gain more experience, the number of diagnosed cases of congenital heart disease has grown steadily, both in Poland and worldwide⁽⁶⁾.

Analysis of data from Polish institutions confirms the need for multi-center and multidisciplinary collaboration in order to further develop screening for fetal heart defects, as well as to set goals for development of cardiac surgery of newborns. This type of collaboration contributes to both coordinated patient care and complex medical treatment, and is a scientific trend for the 21^st century, helping to solve complicated scientific problems⁽⁷⁾. Fortunately, the availability of current information and communication technologies allows partnership between different scientific centers around the world to be feasible⁽⁸⁾.

Therefore, we have established the International Prenatal Cardiology Collaboration Group (www.prenatalcardiology.org) with the aim of bringing together physicians of various specialties who are involved directly in the treatment of pregnant women and their fetuses, for further development of prenatal diagnosis. The IPCCG was established to join current worldwide efforts to improve the standard of care, management and outcomes for fetuses and neonates affected by congenital heart disease.

The aim of our group is to establish research studies on a more expansive assembly of patients from different parts of the world. We plan to share our experience and create study protocols. Research to be conducted includes both retrospective and prospective studies, as well as metaanalyses.

Through the IPCCG it may also be possible to gather a substantial amount of information on severe and very rare fetal heart defects, such as atrial aneurysms, ventricular aneurysms or coronary fistulas. This can enrich knowledge about these diseases, which can consequently improve patient outcome and contribute to the ever developing field of prenatal cardiology.

Collaboration across centers and disciplines is also needed for other reasons. As published recently⁽⁹⁾, treatment costs for rare heart conditions have been growing. Furthermore, it has been stressed that multidisciplinary cooperation can help decide which patents should be treated^{(9, 10)}.

So far, there have been several established multi-center prenatal cardiology programs in Canada and the USA⁽¹¹⁾. Our aim was to create a similar program of collaboration among not only leading centers worldwide, but also with hospitals that want to further develop the fields of prenatal cardiology and prenatal diagnosis.

The perspectives of each specialty are important in creating future standards of practice. We invite all physicians and non-physicians who are involved in prenatal care to collaborate with the IPCCG.