CONCOR registry for patients with congenital heart disease
Research projects and publications

 

1.       Dr. P.G. Pieper, UMCG, Groningen: “Pregnancy in congenital heart disease”

1.1.       Drenthen W, Pieper PG, Ploeg M, Voors AA, Roos-Hesselink JW, Mulder BJ, Vliegen HW, Sollie KM, Ebels T, van Veldhuisen D. Risk of complications during pregnancy after Senning or Mustard (atrial) repair of complete transposition of the great arteries. Eur Heart J. 2005 Dec 26(23); 2588-95.

1.2.       Drenthen W, Pieper PG, van der Tuuk K, Roos-Hesselink JW, Voors AA, Mostert B, Mulder BJ, Moons P, Ebels T, van Veldhuisen DJ. Cardiac complications relating to pregnancy and recurrence of disease in the offspring of women with atrioventricular septal defects. Eur Heart J. 2005 Aug 17.

1.3.       Vriend JW, Drenthen W, Pieper PG, Roos-Hesselink JW, Zwinderman AH, van Veldhuisen DJ, Mulder BJ. Outcome of pregnancy in patients after repair of aortic coarctation. Eur Heart J. 2005;26:2173-2178.

1.4.       Meijer JM, Pieper PG, Drenthen W, Voors AA, Roos-Hesselink JW, van Dijk AP, Mulder BJ, Ebels T, van Veldhuisen DJ. Pregnancy, fertility, and recurrence risk in corrected tetralogy of Fallot. Heart. 2005 Jun;91(6):801-5.

1.5.       Meijboom LJ, Drenthen W, Pieper PG, Groenink M, Post van der JAM, Timmermans J, Voors AA, Roos-Hesselink JW, Veldhuisen van DJ,Mulder BJM. Obstetric complications in the Marfan syndrome. Int J Cardiol. 2006;110:53-59.  

1.6.       Drenthen W, Pieper PG, Roos-Hesselink JW, Zoon N, Voors AA, Mulder BJ, van Dijk AP, Vliegen HW, Sollie KM, Ebels T, van Veldhuisen DJ; ZAHARA Investigators. Fertility, pregnancy, and delivery after biventricular repair for pulmonary atresia with an intact ventricular septum. Am J Cardiol. 2006 Jul 15;98(2):259-61.

1.7.       Drenthen W, Pieper PG, Roos-Hesselink JW, van Lottum WA, Voors AA, Mulder BJ, van Dijk AP, Vliegen HW, Sollie KM, Moons P, Ebels T, van Veldhuisen DJ; ZAHARA Investigators. Pregnancy and delivery in women after Fontan palliation. Heart. 2006 Sep;92(9):1290-4.

1.8.       Drenthen W, Pieper PG, Roos-Hesselink JW, Schmidt AC, Mulder BJ, van Dijk AP, Vliegen HW, Sollie KM, Voors AA, Ebels T, van Veldhuisen DJ; ZAHARA investigators. Non-cardiac complications during pregnancy in women with isolated congenital pulmonary valvar stenosis. Heart 2006 Dec; 92(12):1838-43.

1.9.       Drenthen W, Pieper PG, Zoon N, Roos-Hesselink JW, Voors AA, Mulder BJ, van Dijk AP, Sollie KM, Vliegen HW, Ebels T, van Veldhuisen DJ; ZAHARA Investigators. Pregnancy after biventricular repair for pulmonary atresia with ventricular septal defect. Am J Cardiol. 2006 Jul 15; 98(2):262-6.

1.10.    Drenthen W, Pieper PG, Roos-Hesselink JW, Zoon N, Voors AA, Mulder BJ, van Dijk AP, Vliegen HW, Sollie KM, Ebels T, van Veldhuisen DJ; ZAHARA Investigators. Fertility, pregnancy, and delivery after biventricular repair for pulmonary atresia with an intact ventricular septum. Am J Cardiol. 2006 Jul 15;98(2):259-61.

1.11.    Drenthen W, Pieper PG, Roos-Hesselink JW, van Lottum WA, Voors AA, Mulder BJ, van Dijk AP, Vliegen HW, Yap SC, Moons P, Ebels T, van Veldhuisen DJ; ZAHARA Investigators. Outcome of pregnancy in women with congenital heart disease: a literature review. J Am Coll Cardiol. 2007 Jun 19;49(24):2303-11.

1.12.    Drenthen W, Pieper PG, van der Tuuk K, Roos-Hesselink JW, Hoendermis ES, Voors AA, Mulder BJ, van Dijk AP, Yap SC, Vliegen HW, Moons P, Ebels T, van Veldhuisen DJ Fertility, Pregnancy and Delivery in Women after Biventricular Repair for Double Outlet Right Ventricle.Cardiology. 2007 Aug 14;109(2):105-109.

1.13.    Yap SC, Drenthen W, Pieper PG et al. Risk of complications during pregnancy in women with congenital aortic stenosis. Int J Cardiol 2008 May 23;126(2):240-6.

1.14.    Drenthen W, Hoendermis ES, Moons P et al. Menstrual cycle and its disorders in women with congenital heart disease. Congenit Heart Dis 2008 July;3(4):277-83.

1.15.    Yap SC, Drenthen W, Pieper PG et al. Outcome of pregnancy in women after pulmonary autograft valve replacement for congenital aortic valve disease. J Heart Valve Dis 2007 July;16(4):398-403.

1.16.    Drenthen W, Pieper PG, van der Tuuk K, et al. Fertility, pregnancy and delivery in women after biventricular repair for double outlet right ventricle. Cardiology 2008;109(2):105-9.

1.17.    Drenthen W, Pieper PG, Roos-Hesselink JW et al. Outcome of pregnancy in women with congenital heart disease: a literature review. J Am Coll Cardiol 2007 June 19;49(24):2303-11.

1.18.    Yap SC, Drenthen W, Pieper PG et al. Risk of complications during pregnancy in women with congenital aortic stenosis. Int J Cardiol 2008 May 23;126(2):240-6.

2.       Dr. H.L. Tan, AMC Amsterdam: “Genetic basis of cardiac malformations”

3.      Dr. J. Roos – Hesselink, Erasmus MC Rotterdam: “Molecular etiology LVOT obstruction”

4.      Dr. JW Roos-Hesselink, ErasmusMC, Rotterdam: “Follow-up patients with an AICD.”

4.1.       Sing-Chien Yap, Jolien W. Roos-Hesselink, Elke S. Hoenermis, Werner Budts, Hubert W.Vliegen, Barbara J.M. Mulder, Arie P. van Dijk, Martin Schalij, W. Drenthen. Outcome of implantable cardioverter defibrillators in adults with congenital heart disease: a multi-centre study. Eur Heart J. 2007 Aug;28(15):1854-61.

5.      Drs. M. Kriek, LUMC Leiden: “Identification of genes involved in congenital heart malformations"  

6.      Dr. R.H. Lekanne Deprez, AMC Amsterdam: “Genetic basis of congenital cardiac malformations”

7.      Prof.Dr. K. Devriendt, KU Leuven, Belgium: “PA26, candidategen heterotaxia”

8.      Prof.dr. B.J.M. Mulder, AMC Amsterdam: “Echocardiographic follow-up of pulmonary homograft function late after initial implantation”  

8.1.    Oosterhof T, Mulder BJ, Vliegen HW, de Roos A. Corrected tetralogy of Fallot: delayed enhancement in right ventricular outflow tract.  Radiology. 2005 Dec;237(3):868-71.

8.2.    Oosterhof, T, Meijboom, FJ, Vliegen, HW, Hazekamp, MG, Zwinderman, AH, Bouma, BJ, van Dijk, AP Mulder, BJ: Long-term follow-up of homograft function after pulmonary valve replacement in patients with tetralogy of Fallot. Eur Heart J.  2006 Jun;27(12):1478-84.

8.3.    Oosterhof T, Vliegen HW, Meijboom FJ, Zwinderman AH, Bouma B, Mulder BJ. Long-term effect of pulmonary valve replacement on QRS duration in patients with corrected tetralogy of Fallot. Heart. 2007 Apr;93(4):506-9.Oct 25.

8.4.    Oosterhof T, van Straten A, Vliegen HW, Meijboom FJ, van Dijk AP, Spijkerboer AM, Bouma BJ, Zwinderman AH, Hazekamp MG, de Roos A, Mulder BJ. Preoperative thresholds for pulmonary valve replacement in patients with corrected tetralogy of Fallot using cardiovascular magnetic resonance. Circulation. 2007 Jul 31;116(5):545-51.

8.5.    Oosterhof T, Jacobs M, Cramer MJ, Mulder BJ. Survival into seventh decade after a potts palliation for tetralogy of Fallot. Congenit Heart Dis 2007 January;2(1):55-7.

9.      Dr. A.V. Postma, AMC Amsterdam: “GATA4 polymorphisms in congenital heart disease”

10.  Dr. J. Bakkers, Hubrecht Laboratorium Utrecht: “From zebrafish to man: Mutation discovery in genes required for normal cardiac development”   

11.  Dr. J.W. Roos-Hesselink, Erasmus MC, Rotterdam: “Prospective randomised multicentre study:  statines and aortic stenosis”

12.  Prof R.Berger , UMCG, Groningen: “TGF-β receptor mutations in ASD”   

13.  Prof.dr. B.J.M. Mulder, AMC, Amsterdam: “Pulmonary arterial hypertension”

13.1.    Duffels MGJ, Engelfriet PM, Berger RMF, van Loon RLE, Hoendermis E, Vriend JWJ, van der Velde ET, Bresser P, Mulder BJM. Pulmonary arterial hypertension in congenital  heart disease: An epidemiologic perspective from a Dutch registry. Int J Cardiol 2007 Aug 21;120(2):198-204.

13.2.    M.G.J. Duffels, R.M.F. Berger, P. Bresser, H.A.C.M. de Bruin-Bon, E. Hoendermis, B.J. Bouma, B.J.M. Mulder. Applicability of bosentan in Dutch patients with Eisenmenger syndrome: preliminary results on safety and exercise capacity. Neth Heart J. 2006 May 14 (5): 165-70.

13.3.    van Loon RL, Hoendermis ES, Duffels MG, Vonk-Noordegraaf A, Mulder BJ, Hillege HL,  Berger RM. Long-term effect of bosentan in adults versus children with pulmonary arterial  hypertension associated with systemic-to-pulmonary shunt: does the beneficial effect persist? Am Heart J. 2007 Oct;154(4):776-82.

13.4.    Duffels MG, Vis JC, van Loon RL et al. Down patients with Eisenmenger syndrome: Is bosentan treatment an option? Int J Cardiol 2008 June 23.

13.5.    Hamaker ME, Duffels MG, Reichert CL, Cornel JH, Mulder BJ, Umans VA. [Two patients with Eisenmenger syndrome treated with novel agents that target vasodilation of the pulmonary capillary bed]. Ned Tijdschr Geneeskd 2007 August 11;151(32):1795-9.

14.  Dr. A. Hoffmann, Universiteit Basel, “A multicenter retrospective analysis on cerebrovascular accidents in a population of adults with congenital heart disease”.

15.  Dr A.Van Dijk , UMCN, Nijmegen: “ Morbus Ebstein”

16.  Prof Grobbee, Dr. C.Uiterwaal ,Julius centrum, Utrecht: “Prognosis in congenital heart disease”

16.1.    Verheugt CL, Uiterwaal CS, van der Velde ET, et al. Gender and outcome in adult congenital heart disease. Circulation 2008 July 1;118(1):26-32.

16.2.    Verheugt CL, Uiterwaal CS, Grobbee DE, Mulder BJ. Long-term prognosis of congenital heart defects: A systematic review. Int J Cardiol 2008 August 5.

17.  Prof BJM Mulder, AMC,Amsterdam: “CVA bij  ASD”

18.  Prof.dr. B.J.M. Mulder, prof AF Moorman, AMC, Amsterdam: “Heart failure and cardiac repair; genes for heart repair and plasticity”

19.  Dr A. V. Postma: “Replication cohort for SNP studies in Tetralogy of Fallot”

20.  Dr A. van Dijk, UMCN, Nijmegen: “Exercise in Congenital heart disease”

21.  Dr.Postma AMC,Amsterdam, Denmark: “Genes in Aortic Stenosis”

22.  Prof AAM Wilde, AMC, Amsterdam: “Sodium channels in septal defects”

23.  Prof BJM Mulder, AMC, Amsterdam: “Congenital heart defects inDown syndrome”

24.  Seshadri Balaji, Maully Shah Philadelphia, “Arrhythmia after the Fontan operation:Comparison of the intracardial lateral Tunnel, and the extracardiac conduits procedures.

25.  Prof BJM Mulder, Prof AH Zwinderman:  “Losartan in Marfan syndrome“

25.1.    Lilian J. Meijboom, Janneke Timmermans, Aeiko H. Zwinderman, Peter M. Engelfriet and Barbara J.M. Mulder. Aortic Root Growth in Men and Women with the Marfan’s Syndrome. J Cardiol. 2005 Nov 15; 96 (10)

25.2.    Meijboom LJ, Vos FE, Timmermans J, Boers GH, Zwinderman AH, Mulder BJ Pregnancy and aortic root growth in the Marfan syndrome: a prospective study. Eur Heart J. 200 May;26(9): 914-20.

25.3.    Meijboom LJ, Timmermans J, van Tintelen JP, Nollen GJ, De Backer J, van den Berg MP, Boers GH, Mulder BJ Evaluation of left ventricular dimensions and function in Marfan’s  syndrome without significant valvular regurgitation. Am J Cardiol. 2005 Mar 15;95(6):795-7

25.4.    deBackerJ , Nollen GJ, Devos D, Pals G, Coucke P, Verstraete K, van der Wall EE,  Daepe A, Mulder BJ. Variability of aortic stiffness is not associated with the fibrillin 1 genotype in    patients with Marfan's syndrome. Heart. 2006 Jul;92(7):977-8.

25.5.    Engelfriet PM, Mulder BJM. Is there benefit of beta-blocking agents in the treatment of patients with the Marfan syndrome? Int J Cardiol. 2007 Jan 18;114(3):300-2. Epub 2006 Jun 12

26.  Dr BJ Bouma, Prof BJM Mulder, AMC, Amsterdam: “Statins in Aortic Coarctation”

27.  Prof Gittenberger, LUMC, Leiden, FP7: “Genes in heart valve development”

28.  Drs. M.M. Winter, Dr BJ.Bouma, Prof BJM Mulder: “Angiotensin II receptor blockers in patients with a systemic right ventricle”

28.1.    Winter MM, Bernink FJ, Groenink M et al. Evaluating the systemic right ventricle by CMR: the importance of consistent and reproducible delineation of the cavity. J Cardiovasc Magn Reson 2008;10(1):40.

29.  Prof Willekens, Dr L. /Bonneux, NIDI / KNAW, Den Haag: “Demography  in CHD”

30.  Prof Bhattacharya, J.Goodship, Oxford, UK: “Genetic architecture of Congenital heart disease”

31.  Dr. P.G.Pieper, UMCG Groningen,“Pregnancy in congenital heart disease (ZAHARA2)”.

32.  Prof.dr. I.C. van Gelder, UMC Groningen.  “Arrhythmias in adults with CHD”.

33.  Drs. A.W. Schadenberg UMC Utrecht “Neonatal thymectomy during heart surgery: consequences for the immune system in patients with TGA”

34.  Drs. Joziasse, UMC Utrecht. Genemutations in patients with TGA.

34.1.    Joziasse IC, van de Smagt JJ, Smith K et al. Genes in congenital heart disease: atrioventricular valve formation. Basic Res Cardiol 2008 May;103(3):216-27.

35.  Dr. J.W. Roos-Hesselink, Erasmus MC Rotterdam. Arrythmia after the Fontan operation.

 

Other publications

1. Vis JC, Timmermans J, Post MC et al. Increased prevalence of migraine in Marfan syndrome. Int J Cardiol 2008 August 2.
2. Van der Velde ET, Vriend JW, Mannens MM, Uiterwaal CS, Brand R, Mulder BJ. CONCOR, an initiative towards a national registry and DNA-bank of patients with congenital heart disease in the Netherlands: rationale, design, and first results. Eur J Epidemiol. 2005;20(6):549-57.
3. Vriend JW, van der Velde ET, Mulder BJ. [National registry and DNA-bank of patients with congenital heart disease: the CONCOR-project]. Ned Tijdschr Geneeskd. 2004 Aug 14;148(33):1646-7.
4. Van der Velde ET, Vriend JWJ, Theeuwes E, Murk Jansen HDM, Kuiper J, Hoekstra WHGJ, Mulder BJM: Quality assurance measures in the CONCOR national registry and DNA-bank of patients with congenital heart disease in the Netherlands. Computers in Cardiology 30: 395-398, 2003.