DATA BANK

Making multicenter research data accessible to go from ideas to results faster.

Learn about the CCPCRN databank:

The CCPCRN strives to encourage and facilitate the secondary use of research data. A standardized data banking approach is used to facilitate data analysis, clarify data ownership, and stimulate future secondary use of research data. We believe that such secondary use of data significantly increases the value of research data without increased risk to the participants.

All research projects implemented within the CCPCRN will have their research data banked for future use. New research projects requiring secondary use of research data previously banked must follow the CCPCRN guidelines, be of high scientific value and respect ethical standards of medical research. Each project is thoroughly evaluated by the CCPCRN and a full review of each protocol is performed by an independent research ethics board.

Below is a summary of the available data.

Project:

The QUALITY study – Longitudinal assessment of the quality of life of children and young adults with a heart defect

Population:

Children and adults with a heart defect. Parents of children ≤17 years old with a heart defect.

Overview of collected data:

Demographics, quality of life data (Satisfaction with Life Scale, PROMIS Global Health and PCQLI questionnaires).

Status:

Project development

Project:

Psychological impacts of fetal echocardiography referral and results on the expecting parents

Population:

Pregnant women (and their partner), at 18 to 24 weeks of gestation, with a normal 2nd trimester U/S and referred for a fetal echocardiography.

Overview of collected data: Demographics;

Anxiety data (Spielberger State-Trait Anxiety Inventory) after the 2nd trimester U/S and patient reported experience measures (PREM).

Status:

Data collection ongoing

Project:

Effect of obesity on pediatric echocardiography Z scores

Population:

Healthy children 1-18 years old free of congenital or acquired cardiac condition (obese and normal weight).

Overview of collected data:

Demographics, clinical data, echocardiographic measurements.

Status:

Final data analysis – data available (metadata)

Project:

Prognostic value of cardiopulmonary exercise testing in children with dilated cardiomyopathy

Population:

Children <18 years with MCC defined as a left ventricular ejection faction <50% and a left ventricular Z end diastolic dimension> +2.5, stable with oral medication, who were subjected to an incremental CPET (bike or treadmill) test between 2010 and 2020.

Overview of collected data:

Clinical information at baseline, demographics and echocardiographic data at each CPET, raw breath-by-breath CPET data, clinical outcome.

Status:

Data analysis

Project:

Role of medical therapy in reducing the rate of aortic dilatation in children with bicuspid aortic valve

Population:

Children <18 years with bicuspid aortic valve and dilated ascending aorta (Z > 3).

Overview of collected data:

Demographics, longitudinal echocardiographic data including LVOT measures, longitudinal data on medication, weight and height, outcome data related to LVOT.

Status:

Data collection ongoing – data available (metadata)

Project:

Cardiovascular Disease Risk Profile in Children with Hypertrophic Cardiomyopathy

Population:

Patients aged 10 to 19 years with primary hypertrophic cardiomyopathy.

Overview of collected data:

Demographics, clinical and diagnostic information, including the Healthy Hearts School Program Questionnaire, Habitual Activity Estimation Scale (HAES), Self-Efficacy for Exercise Scale, and the PedsQL.

Status:

Data collection ongoing

Project:

The Quebec congenital heart disease registry

Population:

Any fetus and child <18 years, born after January 1, 2000, with echocardiographic confirmation of a heart defect corresponding to one of the diagnostic codes of the International Pediatric and Congenital Cardiac Code (IPCCC) classification. All the subjects without intervention, diagnosed and followed exclusively in one of the mobile pediatric cardiology clinics are not targeted for this project.

Overview of collected data:

Demographic, UUID, congenital heart disease IPCCC diagnostic codes and the cardiovascular intervention code.

Status:

Data available (metadata)

Project:

3D Pic trial

Population:

Patients between 0 and 20 years of age with certain MCC and requiring interventional cardiac catheterization with axial tomography (CT scan) or magnetic resonance (MRI).

Overview of collected data:

Radiation exposure, procedural data, complications and reoperation rates.

Status:

Awaiting funding