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9. New Genetic Variant in the MYH7 Gene Associated With Hypoplastic Right Heart Syndrome and Hypertrophic Cardiomyopathy in the Same Family

Author

Polyakova, Elizaveta, primary, van Gils, Janine M., additional, Stöger, Lauran, additional, Kiès, Philippine, additional, Egorova, Anastasia D., additional, Koopmann, Tamara T., additional, van Dijk, Tessa, additional, DeRuiter, Marco C., additional, Barge-Schaapveld, Daniela Q.C.M., additional, and Jongbloed, Monique R.M., additional

Published
2023
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10. Catheter-Based Techniques for Addressing Atrioventricular Valve Regurgitation in Adult Congenital Heart Disease Patients: A Descriptive Cohort

Author

El Bouziani, Abdelhak, primary, Witte, Lars S., additional, Bouma, Berto J., additional, Jongbloed, Monique R. M., additional, Robbers-Visser, Daniëlle, additional, Straver, Bart, additional, Beijk, Marcel A. M., additional, Kiès, Philippine, additional, Koolbergen, David R., additional, van der Kley, Frank, additional, Schalij, Martin J., additional, de Winter, Robbert J., additional, and Egorova, Anastasia D., additional

Published
2023
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12. Tolerability and beneficial effects of sacubitril/valsartan on systemic right ventricular failure

Author

Nederend, Marieke, primary, Kiès, Philippine, additional, Regeer, Madelien V, additional, Vliegen, Hubert W, additional, Mertens, Bart JA, additional, Robbers-Visser, Daniëlle, additional, Bouma, Berto J, additional, Tops, Laurens F, additional, Schalij, Martin J, additional, Jongbloed, Monique R M, additional, and Egorova, Anastasia D, additional

Published
2023
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13. Cardiac Fibrosis and Innervation State in Uncorrected and Corrected Transposition of the Great Arteries: A Postmortem Histological Analysis and Systematic Review

Author

Engele, Leo J., primary, van der Palen, Roel L. F., additional, Egorova, Anastasia D., additional, Bartelings, Margot M., additional, Wisse, Lambertus J., additional, Glashan, Claire A., additional, Kiès, Philippine, additional, Vliegen, Hubert W., additional, Hazekamp, Mark G., additional, Mulder, Barbara J. M., additional, Ruiter, Marco C. De, additional, Bouma, Berto J., additional, and Jongbloed, Monique R. M., additional

Published
2023
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14. Step forward in early recognition of systemic sclerosis: data from the Leiden CCISS cohort

Author

Liem, Sophie I E, primary, Ciaffi, Jacopo, additional, van Leeuwen, Nina Marijn, additional, Boonstra, Maaike, additional, Ahmed, Saad, additional, Beaart-van de Voorde, Liesbeth J J, additional, Corsel, Anja, additional, Dhondai, Talitha, additional, Ninaber, Maarten K, additional, Geelhoed-Veltman, J J Miranda, additional, Heuvers, Marlies E, additional, Tushuizen, Maarten E, additional, Ajmone Marsan, Nina, additional, Kiès, Philippine, additional, Schouffoer, Anne A, additional, Huizinga, Tom W J, additional, Allaart, Cornelia F, additional, and De Vries-Bouwstra, Jeska, additional

Published
2023
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15. Contemporary Management Strategies of Baffle Leaks in Adults with a Failing Systemic Right Ventricle Late after Atrial Switch: A Case Series and Literature Overview

Author

Neijenhuis, Ralph M. L., primary, Regeer, Madelien V., additional, van der Kley, Frank, additional, Vliegen, Hubert W., additional, Jongbloed, Monique R. M., additional, Kiès, Philippine, additional, Schalij, Martin J., additional, Jukema, J. Wouter, additional, and Egorova, Anastasia D., additional

Published
2023
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17. A comprehensive analysis of the intramural segment in interarterial anomalous coronary arteries using computed tomography angiography

Author

Team Medisch, Circulatory Health, Koppel, Claire J, Verheijen, Diederick B H, Kiès, Philippine, Egorova, Anastasia D, Lamb, Hildo J, Voskuil, Michiel, Jukema, J Wouter, Koolbergen, Dave R, Hazekamp, Mark G, Schalij, Martin J, Jongbloed, Monique R M, Vliegen, Hubert W, Team Medisch, Circulatory Health, Koppel, Claire J, Verheijen, Diederick B H, Kiès, Philippine, Egorova, Anastasia D, Lamb, Hildo J, Voskuil, Michiel, Jukema, J Wouter, Koolbergen, Dave R, Hazekamp, Mark G, Schalij, Martin J, Jongbloed, Monique R M, and Vliegen, Hubert W

Published
2022

18. Medication in adults after atrial switch for transposition of the great arteries: clinical practice and recommendations

Author

Team Medisch, Circulatory Health, Cardiologie, Woudstra, Odilia I, Kuijpers, Joey M, Jongbloed, Monique R M, van Dijk, Arie P J, Sieswerda, Gertjan Tj, Vliegen, Hubert W, Egorova, Anastasia D, Kiès, Philippine, Duijnhouwer, Anthonie L, Robbers-Visser, Daniëlle, Konings, Thelma C, Zwinderman, Aeilko H, Meijboom, Folkert J, Mulder, Barbara J M, Bouma, Berto J, Team Medisch, Circulatory Health, Cardiologie, Woudstra, Odilia I, Kuijpers, Joey M, Jongbloed, Monique R M, van Dijk, Arie P J, Sieswerda, Gertjan Tj, Vliegen, Hubert W, Egorova, Anastasia D, Kiès, Philippine, Duijnhouwer, Anthonie L, Robbers-Visser, Daniëlle, Konings, Thelma C, Zwinderman, Aeilko H, Meijboom, Folkert J, Mulder, Barbara J M, and Bouma, Berto J

Published
2022

19. Atrioventricular Block Necessitating Chronic Ventricular Pacing After Tricuspid Valve Surgery in Patients With a Systemic Right Ventricle: Long-Term Follow-Up

Author

Nederend, Marieke, primary, Jongbloed, Monique R. M., additional, Kiès, Philippine, additional, Vliegen, Hubert W., additional, Bouma, Berto J., additional, Regeer, Madelien V., additional, Koolbergen, Dave R., additional, Hazekamp, Mark G., additional, Schalij, Martin J., additional, and Egorova, Anastasia D., additional

Published
2022
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20. A comprehensive analysis of the intramural segment in interarterial anomalous coronary arteries using computed tomography angiography

Author

Koppel, Claire J, primary, Verheijen, Diederick B H, additional, Kiès, Philippine, additional, Egorova, Anastasia D, additional, Lamb, Hildo J, additional, Voskuil, Michiel, additional, Jukema, J Wouter, additional, Koolbergen, Dave R, additional, Hazekamp, Mark G, additional, Schalij, Martin J, additional, Jongbloed, Monique R M, additional, and Vliegen, Hubert W, additional

Published
2022
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23. Grand Round: Case report of the broad spectrum of late complications in an adult patient with univentricular physiology palliated by the Fontan circulation

Author

Nederend, Marieke, primary, Egorova, Anastasia D, additional, Vliegen, Hubert W, additional, Roest, Arno A W, additional, Ruijter, Bastian N, additional, Korteweg, Tijmen, additional, Ninaber, Maarten K, additional, Zeppenfeld, Katja, additional, Hazekamp, Mark G, additional, Kiès, Philippine, additional, and Jongbloed, Monique R M, additional

Published
2022
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29. Patient information portal for congenital aortic and pulmonary valve disease:A stepped-wedge cluster randomised trial

Author

Etnel, Jonathan R.G., Bons, Lidia R., De Heer, Frederiek, Robbers-Visser, Daniëlle, Van Beynum, Ingrid M., Straver, Bart, Jongbloed, Monique R.M., Kiès, Philippine, Slieker, Martijn G., Van Dijk, Arie P.J., Kluin, Jolanda, Bertels, Robin A., Utens, Elisabeth M.W.J., The, Regina, Van Galen, Eugene, Mulder, Barbara J.M., Blom, Nico A., Hazekamp, Mark G., Roos-Hesselink, Jolien W., Helbing, Willem A., Bogers, Ad J.J.C., Takkenberg, Johanna J.M., Etnel, Jonathan R.G., Bons, Lidia R., De Heer, Frederiek, Robbers-Visser, Daniëlle, Van Beynum, Ingrid M., Straver, Bart, Jongbloed, Monique R.M., Kiès, Philippine, Slieker, Martijn G., Van Dijk, Arie P.J., Kluin, Jolanda, Bertels, Robin A., Utens, Elisabeth M.W.J., The, Regina, Van Galen, Eugene, Mulder, Barbara J.M., Blom, Nico A., Hazekamp, Mark G., Roos-Hesselink, Jolien W., Helbing, Willem A., Bogers, Ad J.J.C., and Takkenberg, Johanna J.M.

Abstract

Background In response to an increased need for patient information in congenital heart disease, we previously developed an online, evidence-based information portal for patients with congenital aortic and pulmonary valve disease. To assess its effectiveness, a stepped-wedge cluster randomised trial was conducted. Methods Adult patients and caregivers of paediatric patients with congenital aortic and/or pulmonary valve disease and/or tetralogy of Fallot who visited the outpatient clinic at any of the four participating centres in the Netherlands between 1 March 2016-1 July 2017 were prospectively included. The intervention (information portal) was introduced in the outpatient clinic according to a stepped-wedge randomised design. One month after outpatient clinic visit, each participant completed a questionnaire on disease-specific knowledge, anxiety, depression, mental quality of life, involvement and opinion/attitude concerning patient information and involvement. Results 343 participants were included (221 control, 122 intervention). Cardiac diagnosis (p=0.873), educational level (p=0.153) and sex (p=0.603) were comparable between the two groups. All outcomes were comparable between groups in the intention-to-treat analyses. However, only 51.6% of subjects in the intervention group (n=63) reported actually visiting the portal. Among these subjects (as-treated), disease-specific knowledge (p=0.041) and mental health (p=0.039) were significantly better than in control subjects, while other baseline and outcome variables were comparable. Conclusion Even after being invited by their cardiologists, only half of the participants actually visited the information portal. Only in those participants that actually visited the portal, knowledge of disease and mental health were significantly better. This underlines the importance of effective implementation of online evidence-based patient information portals in clinical practice.

Published
2021

30. Patient information portal for congenital aortic and pulmonary valve disease: A stepped-wedge cluster randomised trial

Author

Perfusie, Etnel, Jonathan R.G., Bons, Lidia R., De Heer, Frederiek, Robbers-Visser, Daniëlle, Van Beynum, Ingrid M., Straver, Bart, Jongbloed, Monique R.M., Kiès, Philippine, Slieker, Martijn G., Van Dijk, Arie P.J., Kluin, Jolanda, Bertels, Robin A., Utens, Elisabeth M.W.J., The, Regina, Van Galen, Eugene, Mulder, Barbara J.M., Blom, Nico A., Hazekamp, Mark G., Roos-Hesselink, Jolien W., Helbing, Willem A., Bogers, Ad J.J.C., Takkenberg, Johanna J.M., Perfusie, Etnel, Jonathan R.G., Bons, Lidia R., De Heer, Frederiek, Robbers-Visser, Daniëlle, Van Beynum, Ingrid M., Straver, Bart, Jongbloed, Monique R.M., Kiès, Philippine, Slieker, Martijn G., Van Dijk, Arie P.J., Kluin, Jolanda, Bertels, Robin A., Utens, Elisabeth M.W.J., The, Regina, Van Galen, Eugene, Mulder, Barbara J.M., Blom, Nico A., Hazekamp, Mark G., Roos-Hesselink, Jolien W., Helbing, Willem A., Bogers, Ad J.J.C., and Takkenberg, Johanna J.M.

Published
2021

31. Clinical course long after atrial switch: A novel risk score for major clinical events

Author

Team Onderzoek, Team Medisch, Regenerative Medicine and Stem Cells, Circulatory Health, Cardiologie, Woudstra, Odilia I., Zandstra, Tjitske E., Vogel, Rosanne F., van Dijk, Arie P.J., Vliegen, Hubert W., Kiès, Philippine, Jongbloed, Monique R.M., Egorova, Anastasia D., Doevendans, Pieter A.F.M., Konings, Thelma C., Mulder, Barbara J.M., Tanck, Michael W.T., Meijboom, Folkert J., Bouma, Berto J., Team Onderzoek, Team Medisch, Regenerative Medicine and Stem Cells, Circulatory Health, Cardiologie, Woudstra, Odilia I., Zandstra, Tjitske E., Vogel, Rosanne F., van Dijk, Arie P.J., Vliegen, Hubert W., Kiès, Philippine, Jongbloed, Monique R.M., Egorova, Anastasia D., Doevendans, Pieter A.F.M., Konings, Thelma C., Mulder, Barbara J.M., Tanck, Michael W.T., Meijboom, Folkert J., and Bouma, Berto J.

Published
2021

32. Computed Tomography Derived Coronary Triangulated Orifice Area—Deduction of a New Parameter for Follow-up After Surgical Correction of Anomalous Aortic Origin of Coronary Arteries and Call for Validation

Author

Meijer, Fleur M. M., primary, Kiès, Philippine, additional, Verheijen, Diederick B. H., additional, Vliegen, Hubert W., additional, Jongbloed, Monique R. M., additional, Hazekamp, Mark G., additional, Lamb, Hildo J., additional, and Egorova, Anastasia D., additional

Published
2021
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33. Validation and Feasibility of Echocardiographic Assessment of Systemic Right Ventricular Function: Serial Correlation With MRI

Author

Zandstra, Tjitske E., primary, Jongbloed, Monique R. M., additional, Widya, Ralph L., additional, ten Harkel, Arend D. J., additional, Holman, Eduard R., additional, Mertens, Bart J. A., additional, Vliegen, Hubert W., additional, Egorova, Anastasia D., additional, Schalij, Martin J., additional, and Kiès, Philippine, additional

Published
2021
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34. Clinical Course Long After Atrial Switch: A Novel Risk Score for Major Clinical Events

Author

Woudstra, Odilia I., primary, Zandstra, Tjitske E., additional, Vogel, Rosanne F., additional, van Dijk, Arie P. J., additional, Vliegen, Hubert W., additional, Kiès, Philippine, additional, Jongbloed, Monique R. M., additional, Egorova, Anastasia D., additional, Doevendans, Pieter A. F. M., additional, Konings, Thelma C., additional, Mulder, Barbara J. M., additional, Tanck, Michael W. T., additional, Meijboom, Folkert J., additional, and Bouma, Berto J., additional

Published
2021
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35. Patient information portal for congenital aortic and pulmonary valve disease: a stepped-wedge cluster randomised trial

Author

Etnel, Jonathan R G, primary, Bons, Lidia R, additional, De Heer, Frederiek, additional, Robbers-Visser, Daniëlle, additional, Van Beynum, Ingrid M, additional, Straver, Bart, additional, Jongbloed, Monique RM, additional, Kiès, Philippine, additional, Slieker, Martijn G, additional, Van Dijk, Arie P J, additional, Kluin, Jolanda, additional, Bertels, Robin A, additional, Utens, Elisabeth M W J, additional, The, Regina, additional, Van Galen, Eugene, additional, Mulder, Barbara J M, additional, Blom, Nico A, additional, Hazekamp, Mark G, additional, Roos-Hesselink, Jolien W, additional, Helbing, Willem A, additional, Bogers, Ad J J C, additional, and Takkenberg, Johanna J M, additional

Published
2021
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38. The Leiden Convention coronary coding system: translation from the surgical to the universal view

Author

Koppel, Claire J, primary, Vliegen, Hubert W, additional, Bökenkamp, Regina, additional, ten Harkel, A Derk Jan, additional, Kiès, Philippine, additional, Egorova, Anastasia D, additional, Jukema, J Wouter, additional, Hazekamp, Mark G, additional, Schalij, Martin J, additional, Gittenberger-de Groot, Adriana C, additional, and Jongbloed, Monique R M, additional

Published
2021
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42. Medication in adults after atrial switch for transposition of the great arteries: clinical practice and recommendations

Author

Woudstra, Odilia I, primary, Kuijpers, Joey M, additional, Jongbloed, Monique R M, additional, van Dijk, Arie P J, additional, Sieswerda, Gertjan T, additional, Vliegen, Hubert W, additional, Egorova, Anastasia D, additional, Kiès, Philippine, additional, Duijnhouwer, Anthonie L, additional, Robbers-Visser, Daniëlle, additional, Konings, Thelma C, additional, Zwinderman, Aeilko H, additional, Meijboom, Folkert J, additional, Mulder, Barbara J M, additional, and Bouma, Berto J, additional

Published
2020
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46. Leiden Convention coronary coding system: translation from the surgical to the universal view.

Author

Koppel, Claire J, Vliegen, Hubert W, Bökenkamp, Regina, Harkel, A Derk Jan ten, Kiès, Philippine, Egorova, Anastasia D, Jukema, J Wouter, Hazekamp, Mark G, Schalij, Martin J, Groot, Adriana C Gittenberger-de, and Jongbloed, Monique R M

Subjects
CORONARY arterial radiography, PULMONARY valve, ECHOCARDIOGRAPHY, CARDIOLOGISTS, THORACIC surgery, CONGENITAL heart disease, MAGNETIC resonance imaging, DIAGNOSTIC imaging, CORONARY angiography, CORONARY arteries, COMPUTED tomography
Abstract

Aims The Leiden Convention coronary coding system structures the large variety of coronary anatomical patterns; isolated and in congenital heart disease. It is widely used by surgeons but not by cardiologists as the system uses a surgeons' cranial view. Since thoracic surgeons and cardiologists work closely together, a coronary coding system practical for both disciplines is mandatory. To this purpose, the 'surgical' coronary coding system was adapted to an 'imaging' system, extending its applicability to different cardiac imaging techniques. Methods and results The physician takes place in the non-facing sinus of the aortic valve, oriented with the back towards the pulmonary valve, looking outward from the sinus. From this position, the right-hand sinus is sinus 1, and the left-hand sinus is sinus 2. Next, a clockwise rotation is adopted starting at sinus 1 and the encountered coronary branches described. Annotation of the normal anatomical pattern is 1R-2LCx, corresponding to the 'surgical' coding system. The 'imaging' coding system was made applicable for Computed Tomography (CT), Magnetic Resonance Imaging (MRI), echocardiography, and coronary angiography, thus facilitating interdisciplinary use. To assess applicability in daily clinical practice, images from different imaging modalities were annotated by cardiologists and cardiology residents and results scored. The average score upon evaluation was 87.5%, with the highest scores for CT and MRI images (average 90%). Conclusion The imaging Leiden Convention is a coronary coding system that unifies the annotation of coronary anatomy for thoracic surgeons, cardiologists, and radiologists. Validation of the coding system shows it can be easily and reliably applied in clinical practice. [ABSTRACT FROM AUTHOR]

Published
2022
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47. Case report of the broad spectrum of late complications in an adult patient with univentricular physiology palliated by the Fontan circulation.

Author

Nederend, Marieke, Egorova, Anastasia D, Vliegen, Hubert W, Roest, Arno A W, Ruijter, Bastian N, Korteweg, Tijmen, Ninaber, Maarten K, Zeppenfeld, Katja, Hazekamp, Mark G, Kiès, Philippine, and Jongbloed, Monique R M

Subjects
CONGENITAL heart disease, VENA cava inferior, VENA cava superior, PULMONARY circulation, CARDIAC patients, TRANSPOSITION of great vessels
Abstract

Background At the most severe end of the spectrum of congenital heart disease are patients with an univentricular physiology. They comprise a heterogeneous group of congenital heart malformations that have the common characteristic that the cardiac morphology is not equipped for sustaining a biventricular circulation. Case summary Here, we present a case of an adult patient after Fontan palliation, illustrative of the complex clinical course and the broad spectrum of complications that can be encountered during follow-up, highlighting the need for a multidisciplinary approach in the clinical care for these patients. Discussion During the surgical Fontan procedure, the inferior vena cava is connected to the pulmonary circulation, after prior connection of the superior vena cava to the pulmonary arterial circulation. The resulting cavopulmonary connection, thus lacking a subpulmonic ventricle, provides non-pulsatile passive flow of oxygen-poor blood from the systemic venous circulation into the lungs, and the functional monoventricle pumps the oxygen-rich pulmonary venous return blood into the aorta. With an operative mortality of <5% and current 30-year survival rates up to 85%, the adult population of patients with a Fontan circulation is growing. This increase in survival is, however, inevitably accompanied by long-term complications affecting multiple organ systems, resulting in decline in cardiovascular performance. Conclusion For optimal treatment, the evaluation in a multidisciplinary team is mandatory, using the specific expertise of the team members to timely detect and address late complications and to support quality of life. [ABSTRACT FROM AUTHOR]

Published
2022
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