Design and Implementation of a Prospective Adult Congenital Heart Disease Biobank

Opotowsky, Alexander R.; Loukas, Brittani; Ellervik, Christina; Moko, Lilamarie; Singh, Michael; Landzberg, Elizabeth; Rimm, Eric B.; Landzberg, Michael J.

doi:10.1177/2150135116672648

Cited by 16 publications

(9 citation statements)

References 43 publications

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“…Details of the design and methodology of this cohort study have been published. 12 Additional data were collected to assign AP classification by chart review accurately. This study was approved by Boston Children's Hospital's Institutional Review Board with a formal reliance agreement between the Partners HealthCare/Brigham and Women's Hospital and Boston Children's Hospital institutional review boards.…”

Section: Methodsmentioning

confidence: 99%

Associations Between Clinical Outcomes and a Recently Proposed Adult Congenital Heart Disease Anatomic and Physiological Classification System

Lachtrupp

Valente

Gurvitz

et al. 2021

JAHA

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Background American Heart Association and American College of Cardiology consensus guidelines introduce an adult congenital heart disease anatomic and physiological (AP) classification system. We assessed the association between AP classification and clinical outcomes. Methods and Results Data were collected for 1000 outpatients with ACHD prospectively enrolled between 2012 and 2019. AP classification was assigned based on consensus definitions. Primary outcomes were (1) all‐cause mortality and (2) a composite of all‐cause mortality or nonelective cardiovascular hospitalization. Cox regression models were developed for AP classification, each component variable, and additional clinical models. Discrimination was assessed using the Harrell C statistic. Over a median follow‐up of 2.5 years (1.4–3.9 years), the composite outcome occurred in 185 participants, including 49 deaths. Moderately or severely complex anatomic class (class II/III) and severe physiological stage (stage D) had increased risk of the composite outcome (AP class IID and IIID hazard ratio, 4.46 and 3.73, respectively, versus IIC). AP classification discriminated moderately between patients who did and did not suffer the composite outcome (C statistic, 0.69 [95% CI, 0.67–0.71]), similar to New York Heart Association functional class and NT‐proBNP (N‐terminal pro‐B‐type natriuretic peptide); it was more strongly associated with mortality (C statistic, 0.81 [95% CI, 0.78–0.84]), as were NT‐proBNP and functional class. A model with AP class and NT‐proBNP provided the strongest discrimination for the composite outcome (C statistic, 0.73 [95% CI, 0.71–0.75]) and mortality (C statistic, 0.85 [95% CI, 0.82–0.88]). Conclusions The addition of physiological stage modestly improves the discriminative ability of a purely anatomic classification, but simpler approaches offer equivalent prognostic information. The AP system may be improved by addition of key variables, such as circulating biomarkers, and by avoiding categorization of continuous variables.

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Section: Methodsmentioning

confidence: 99%

Associations Between Clinical Outcomes and a Recently Proposed Adult Congenital Heart Disease Anatomic and Physiological Classification System

Lachtrupp

Valente

Gurvitz

et al. 2021

JAHA

Self Cite

View full text Add to dashboard Cite

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“…Details of the Boston ACHD Biobank have been published previously. 13 The study complied with the Declaration of Helsinki, was approved by Boston Children's Hospital's Institutional Review Board with a formal reliance agreement between the Partners HealthCare/Brigham and Women's Hospital and Boston Children's Hospital Institutional Review Boards, and informed consent was obtained from all subjects or their legally authorized representative.…”

Section: Study Samplementioning

confidence: 99%

“…Demographic and clinical data were collected from the participants' medical records as previously described. 13 When possible, variables reflect testing from the day of baseline visit when hsCRP was measured. In the absence of intervening clinical intervention or events, we included data obtained within 2 years of sample collection.…”

Section: Data Collection and Definitionsmentioning

confidence: 99%

Prospective cohort study of C-reactive protein as a predictor of clinical events in adults with congenital heart disease: results of the Boston adult congenital heart disease biobank

Opotowsky

Valente

Alshawabkeh

et al. 2018

European Heart Journal

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“… 4 In combination with related clinical data, biospecimens (blood and residual tissue samples) are important materials for studying the aetiology of CHD. 5 6 …”

Section: Introductionmentioning

confidence: 99%

Parental attitudes and willingness to donate children’s biospecimens for congenital heart disease research: a cross-sectional study in Shanghai, China

et al. 2018

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ObjectivesTo assess attitudes and willingness of parents of children with congenital heart disease (CHD) regarding donating biospecimens for future CHD research, and to identify factors associated with biospecimen donation.DesignFace-to-face cross-sectional survey data were analysed using logistic regression.SettingCardiothoracic Surgery Inpatient Department, Shanghai Children’s Medical Centre.ParticipantsParents of children attending the cardiothoracic surgery inpatient department at Shanghai Children’s Medical Center, 1 March–31 December 2016.Primary and secondary outcome measuresWillingness and motivation regarding donating children’s biospecimens, and ethical and legal considerations concerning children’s future willingness to donate.ResultsOf 550 parents, 508 completed the questionnaire (response rate=92.4%). Overall, 69.1% (n=351) were willing to donate their children’s biospecimens for medical research. Multivariate analysis indicated higher education level (college/graduate degree: OR 2.435, 95% CI 1.221 to 4.857, p=0.012; high school: OR 1.827, 95% CI 1.190 to 2.804, p=0.006) and children’s hospitalisation history (OR 1.581; 95% CI 1.069 to 2.338, p=0.022) were positively associated with willingness to donate. The most common motivation for donation was potential benefit to other children with CHD (81.2%, n=285). The main barriers to donation were physical discomfort to their children (52.3%, n=54) and concerns about personal privacy (47.1%, n=48). Most parents (86.0%, n=302) wanted to be informed of research results using their children’s donated biospecimens, and 34.8% (n=177) believed that children aged 10–18 years had the right to consent independently to research participation.ConclusionsNearly 70% of the parents in this study were willing to donate their children’s biospecimens for future CHD research. Parents’ education level and children’s hospitalisation history influenced willingness to donate. Most parents wanted to receive the research results related to their children’s biospecimens.

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Design and Implementation of a Prospective Adult Congenital Heart Disease Biobank

Cited by 16 publications

References 43 publications

Associations Between Clinical Outcomes and a Recently Proposed Adult Congenital Heart Disease Anatomic and Physiological Classification System

Associations Between Clinical Outcomes and a Recently Proposed Adult Congenital Heart Disease Anatomic and Physiological Classification System

Prospective cohort study of C-reactive protein as a predictor of clinical events in adults with congenital heart disease: results of the Boston adult congenital heart disease biobank

Parental attitudes and willingness to donate children’s biospecimens for congenital heart disease research: a cross-sectional study in Shanghai, China

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