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

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Journal of Ultrasonography

Polish Ultrasound Society (Polskie Towarzystwo Ultrasonograficzne)

Subject: Medicine

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ISSN: 2084-8404
eISSN: 2451-070X

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VOLUME 16 , ISSUE 64 (March 2016) > List of articles

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

Maciej Słodki * / Katarzyna Zych-Krekora / Roland Axt-Fliedner / Ana Bianchi / Edward Araujo Junior / Isaac Blickstein / Sefa Kelekci / '> Lami Yeo / '> Jay D. Pruetz / Giuseppe Rizzo / Neil Seligman / '> Mark Sklansky / Luc de Catte / Stuart Weiner / Frank Chervenak / Jader Cruz / '> Andrii Kurkevych / Michał Krekora / Maria Respondek-Liberska

Citation Information : Journal of Ultrasonography. Volume 16, Issue 64, Pages 94-96, DOI: https://doi.org/10.15557/JoU.2016.0010

License : (CC BY-NC-ND 3.0)

Received Date : 25-February-2016 / Accepted: 03-March-2016 / Published Online: 29-March-2016

ARTICLE

ABSTRACT

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 21st 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.

References


  1. Simpson LL,Screening for congenital heart disease Obstet Gynecol Clin North Am 2004 31 51 59
    [PUBMED] [CROSSREF]
  2. Ferencz C,Rubin JD,McCarter J,Brenner JI,Neil CA,Perry LW,Congenital heart disease: prevalence at live birth. The Baltimore Washington Infant Study Am J Epidemiol 1985 121 31 36
    [PUBMED] [CROSSREF]
  3. Yagel S,Weissman A,Rotstein Z,Manor M,Hegesh J,Anteby E,Congenital heart defects: natural course and in utero development Circulation 1997 96 550 555
    [PUBMED] [CROSSREF]
  4. Beeri M,Haramati Z,Rein JJ,Nir A,Parental knowledge and views of pediatric congenital heart disease Isr Med Assoc J 2001 3 194 197
    [PUBMED]
  5. Frias JL,Ges-sner IH,Victrorica BE,Genetic issues of congenital heart disease Pediatric cardiology 1993 Philadelphia Saunders 237 242
  6. Slodki M,Szymkiewicz-Dangel J,Tobota Z,Seligman NS,Weiner S,Respondek-Liberska M,The Polish National Registry for Fetal Cardiac Pathology: organization, diagnoses, management, educational aspects and telemedicine endeavors Prenat Diagn 2012 32 456 460
    [PUBMED] [CROSSREF]
  7. Sonnenwald DH,Cronin B,Scientific Collaboration Annual Review of Information Science & Technology 2007 Medford Information Today 643 681
  8. Duysburgh P,Naessens K,Konings W,Jacobs A,Collaboration in a multidisciplinary, distributed research organization: a case study Higher Education Policy 2012 25 267 288
    [CROSSREF]
  9. NewsRx – News Reporter – Staff News Editor at Heart Disease Weekly: A new study on heart disorders and diseases 2016
  10. Słodki M,[Prenatal and perinatal management for pregnant women with fetal cardiac defects based on new prenatal cardiac anomalies classification (habilitation thesis)] 2012 PWSZ Plock University of Lodz
  11. Donofrio MT,Rychik J,Fetal Heart Society Governing Board and Steering Committee: Multidisciplinary collaboration in fetal cardiovascular research: the time has come J Am Soc Echocardiogr 2016 29 140 142
    [PUBMED] [CROSSREF]
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REFERENCES

  1. Simpson LL,Screening for congenital heart disease Obstet Gynecol Clin North Am 2004 31 51 59
    [PUBMED] [CROSSREF]
  2. Ferencz C,Rubin JD,McCarter J,Brenner JI,Neil CA,Perry LW,Congenital heart disease: prevalence at live birth. The Baltimore Washington Infant Study Am J Epidemiol 1985 121 31 36
    [PUBMED] [CROSSREF]
  3. Yagel S,Weissman A,Rotstein Z,Manor M,Hegesh J,Anteby E,Congenital heart defects: natural course and in utero development Circulation 1997 96 550 555
    [PUBMED] [CROSSREF]
  4. Beeri M,Haramati Z,Rein JJ,Nir A,Parental knowledge and views of pediatric congenital heart disease Isr Med Assoc J 2001 3 194 197
    [PUBMED]
  5. Frias JL,Ges-sner IH,Victrorica BE,Genetic issues of congenital heart disease Pediatric cardiology 1993 Philadelphia Saunders 237 242
  6. Slodki M,Szymkiewicz-Dangel J,Tobota Z,Seligman NS,Weiner S,Respondek-Liberska M,The Polish National Registry for Fetal Cardiac Pathology: organization, diagnoses, management, educational aspects and telemedicine endeavors Prenat Diagn 2012 32 456 460
    [PUBMED] [CROSSREF]
  7. Sonnenwald DH,Cronin B,Scientific Collaboration Annual Review of Information Science & Technology 2007 Medford Information Today 643 681
  8. Duysburgh P,Naessens K,Konings W,Jacobs A,Collaboration in a multidisciplinary, distributed research organization: a case study Higher Education Policy 2012 25 267 288
    [CROSSREF]
  9. NewsRx – News Reporter – Staff News Editor at Heart Disease Weekly: A new study on heart disorders and diseases 2016
  10. Słodki M,[Prenatal and perinatal management for pregnant women with fetal cardiac defects based on new prenatal cardiac anomalies classification (habilitation thesis)] 2012 PWSZ Plock University of Lodz
  11. Donofrio MT,Rychik J,Fetal Heart Society Governing Board and Steering Committee: Multidisciplinary collaboration in fetal cardiovascular research: the time has come J Am Soc Echocardiogr 2016 29 140 142
    [PUBMED] [CROSSREF]

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