Secundum atrial septal defect is associated with reduced survival in adult men

Kuijpers, Joey M.; Bom, Teun van der; Riel, Annelieke C.M.J. van; Meijboom, Folkert J.; Dijk, Arie P.J. van; Pieper, Petronella G.; Vliegen, Hubert W.; Waskowsky, Willem M.; Oomen, Toon; Zomer, Anoek; Wagenaar, Lodewijk J.; Heesen, Wilfred F.; Roos‐Hesselink, Jolien W.; Zwinderman, Aeilko H.; Mulder, Barbara J.M.; Bouma, Berto J.

doi:10.1093/eurheartj/ehv097

Cited by 37 publications

(13 citation statements)

References 33 publications

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“…The increased mortality in simple CHD lesions reported by Videbaek et al, for example, was also found in a recent study from the Concor registry. 4 Both study designs had important and different limitations, well described in the articles and accompanying editorials, 1,2,4,5 but eventually showed similar results. This is reassuring for the reliability of registry-based results.…”

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confidence: 82%

Letter by Bokma et al Regarding Article, “Long-Term Nationwide Follow-up Study of Simple Congenital Heart Disease Diagnosed in Otherwise Healthy Children”

2016

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Large nationwide registries, such as those from Quebec, Denmark, and the Netherlands, are of paramount importance in the research domain of congenital heart disease (CHD) with relatively small patient numbers in compared with, for instance, coronary artery disease. In the interesting Danish registry-based study, Videbaek et al 1 showed that patients diagnosed with simple CHD in the 1960s have substantially increased long-term mortality and cardiac morbidity in comparison with the general population. In 1241 patients with simple CHD, the mortality rate was almost 2-fold higher than the Danish reference population. The unexpected increased mortality in these patients was mainly attributed to a 4-fold increased risk for sudden unexpected death. The authors conclude that further studies on the effectiveness of systematic medical follow-up programs appear warranted. As reported in the accompanying editorial, 2 these findings are highly relevant because current guidelines indicate no specialist care for many patients with simple CHD.Registry-based studies in CHD are warmly welcomed because large volumes of patients with CHD are needed to perform epidemiological studies. However, such registry-based studies also have several limitations. For instance, misclassification or underreporting of morbidity may occur because hospital records are not always systematically reviewed. As an example, the study by Videbaek et al reported only 15 registered cases of pulmonary arterial hypertension in a sample of 1100 patients at risk. This prevalence is remarkably lower than the 52 patients with pulmonary arterial hypertension in a similar population of 1115 patients with simple CHD at risk in our Dutch Concor registry.3 The possibility of a systematic review of clinical records for which patients provided informed consent in the Concor registry may explain the higher numbers in this registry.The Dutch Concor registry, however, has the limitation of incomplete inclusion. Because informed consent is needed for inclusion in this voluntary adult registry, adult CHD patients are not included automatically. Time-consuming identification of and approaching adult CHD patients account for the incompleteness of the Concor registry, whereas the voluntary aspect appears to be of minor importance, because 99% of patients identified are willing to participate in the Concor registry.Although the specific limitations of each large population registry may differ substantially from each other, registry-based studies may complement each other and similar results provide support for shared conclusions. The increased mortality in simple CHD lesions reported by Videbaek et al, for example, was also found in a recent study from the Concor registry. 4 Both study designs had important and different limitations, well described in the articles and accompanying editorials, 1,2,4,5 but eventually showed similar results. This is reassuring for the reliability of registry-based results.In summary, large registry-based studies are a must in CHD, because large pati...

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confidence: 82%

Letter by Bokma et al Regarding Article, “Long-Term Nationwide Follow-up Study of Simple Congenital Heart Disease Diagnosed in Otherwise Healthy Children”

2016

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“…PSI is a cooperation of all eight Dutch University Medical Centers (UMCs) and aims at building large prospectively collected datasets with uniform and standardized storage of biomaterials for complex diseases. Currently, PSI covers 18 disease-specific cohorts called 'Pearls', and this number is still growing [2][3][4][5][6][7][8][9][10][11][12][13][14][15][16][17][18]. PSI is centrally organized and has an executive board for operational management to ensure collective standardization strategies.…”

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confidence: 99%

“…Regarding all disease cohorts, the research projects based on PSI data and samples have led to several scientific publications [2][3][4][5][6][7][8][9][10][11][12][13][14][15][16]18].…”

Section: Release Datementioning

confidence: 99%

Dutch Parelsnoer Institute-Cerebrovascular Accident (CVA) Study: A Large Multicenter Clinical Biobank with Standardized Collection and Storage

Ruigrok

Manniën³

et al. 2018

Open Journal of Bioresources

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“…In 2007, the Netherlands Federation of University Medical Centers (NFU) launched the Parelsnoer Institute (PSI) [1], with the aim of facilitating medical research and innovation ultimately leading to better diagnosis, treatment or even prevention of complex disorders [2][3][4][5][6][7][8][9][10][11][12][13][14][15][16][17]. PSI is a collaborative network of all eight Dutch University Medical Centers (UMCs), also known as academic teaching hospitals.…”

Section: Project Descriptionmentioning

confidence: 99%

“…PSI releases data and samples to research projects on a regular basis. Thus far, the research projects have led to many scientific publications [3][4][5][6][7][8][9][10][11][12][13][14][15][16][17].…”

Section: Release Datementioning

confidence: 99%

The Parelsnoer Institute: A National Network of Standardized Clinical Biobanks in the Netherlands

Manniën

Ledderhof²,

Verspaget

et al. 2017

Open Journal of Bioresources

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The Parelsnoer Institute (PSI) is a collaborative biobanking project of all eight University Medical Centers in the Netherlands which was launched in 2007. Basically, PSI consists of three dimensions: participating institutions, disease entities and a central organization. An executive board for operational management instigates collective strategic and tactic policies and a central team of PSI experts and advisors supports the researchers and the board in establishing and implementing standards and procedures. PSI offers researchers an infrastructure and standard procedures for the establishment, expansion and optimisation of clinical biobanks for scientific research. To ensure patient privacy clinical data is pseudomized and carefully stored in a central database. Human biomaterials are collected according to nationally agreed standards.Currently PSI covers fifteen large disease specific cohorts (the so-called 'Parels' or 'Pearls') and new 'Pearls' are being developed. The Parelsnoer Institute currently (December 2016) has stored more than 538,000 biospecimens with annotated clinical data of more than 30,000 patients. All these materials and data are available for anyone with a bona fide research proposal.

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Secundum atrial septal defect is associated with reduced survival in adult men

Cited by 37 publications

References 33 publications

Letter by Bokma et al Regarding Article, “Long-Term Nationwide Follow-up Study of Simple Congenital Heart Disease Diagnosed in Otherwise Healthy Children”

Letter by Bokma et al Regarding Article, “Long-Term Nationwide Follow-up Study of Simple Congenital Heart Disease Diagnosed in Otherwise Healthy Children”

Dutch Parelsnoer Institute-Cerebrovascular Accident (CVA) Study: A Large Multicenter Clinical Biobank with Standardized Collection and Storage

The Parelsnoer Institute: A National Network of Standardized Clinical Biobanks in the Netherlands

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