National Congenital Heart Disease Audit

NCT ID: NCT02303535

Last Updated: 2016-11-04

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

UNKNOWN

Total Enrollment

120000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2000-04-30

Study Completion Date

2017-03-31

Brief Summary

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The National Institute of Cardiovascular Outcomes Research (NICOR) collects data and produces analysis to enable hospitals and healthcare improvement bodies to monitor and improve the quality of care and outcomes of cardiovascular patients.

The Congenital Heart Disease audit collects data on all cardiac surgery and therapeutic cardiac catheterisations procedures used to treat patients with congenital and acquired heart disease.

For acquired heart disease, the audit covers all arrhythmias \& cardiomyopathies in patients less than 16 years old only. For congenital heart disease, the audit collects data on both children and adult patients. The audit covers all specialist centers in the UK and Republic of Ireland.

The project aims to improve the quality of care for children and adults with congenital heart disease by providing national comparative analysis of procedure specific activity and outcomes of cardiac surgery and therapeutic cardiac catheterisation procedures. The audit also provides quality indicators for the antenatal detection of major congenital heart disease.

The current dataset is available from here:

http://www.ucl.ac.uk/nicor/audits/congenital/datasets

Detailed Description

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The Congenital Heart Disease audit collects data on all cardiac surgery and therapeutic cardiac catheterisations procedures used to treat patients with congenital and acquired heart disease

Data collection:

Hospitals use Patient Administration Systems and manual data entry by cardiac database managers to submit data to NICOR.

Data are either assimilated locally using third party commercial software and imported as a .csv file, or entered directly onto the NICOR database.

Data quality:

NICOR provide tools that communicate possible errors to centres submitting data. A data submitting schedule has been agreed with the centres, data is submitted and a validation report is returned each quarter. Centres are responsible for updating errors in the records.

An import log highlights missing and invalid data as well as records that failed to import due to data quality or compatibility issues.

In addition, data is validated by on site visits with a NICOR representative.

Data linkage:

Data is annually linked with Office fot National Statistics (ONS) life status and Hospital Episodes Statistics (HES) admission data to verify case ascertainment and to track long term outcome measures.

Information governance:

NICOR has Section 251 approval and data protection registration. An organisation-wide standard operating procedure is in place for Information Security Incident Management. University College London has a robust information governance framework, to which NICOR adheres.

Conditions

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Congenital Heart Disease (CHD)

Keywords

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Congenital heart disease European Paediatric Cardiac Code Short List Specific Procedure Definitions OPCS paediatric pediatric

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Congenital

All patients with congential and acquired heart disease treated by cardiac surgery and therapeutic cardiac catheterisations procedures .

For acquired heart disease, the audit covers all arrhythmias \& cardiomyopathies in patients less than 16 years old only.

For congenital heart disease, the audit collects data on both children and adult patients.

Cardiac Surgery

Intervention Type PROCEDURE

All patients with congential and acquired heart disease treated by cardiac surgery procedures.

Therapeutic cardiac catheterisations procedures

Intervention Type PROCEDURE

All patients with congential and acquired heart disease treated by therapeutic cardiac catheterisations procedures .

Interventions

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Cardiac Surgery

All patients with congential and acquired heart disease treated by cardiac surgery procedures.

Intervention Type PROCEDURE

Therapeutic cardiac catheterisations procedures

All patients with congential and acquired heart disease treated by therapeutic cardiac catheterisations procedures .

Intervention Type PROCEDURE

Other Intervention Names

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Norwood procedure (Stage 1) Heart Transplant TAPVD Repair + Arterial Shunt Fontan procedure Bidirectional cavopulmonary shunt Senning or Mustard procedure Truncus and interruption repair Truncus arteriosus repair Tricuspid valve replacement Interrupted aortic arch repair Multiple VSD Closure Mitral valve replacement Repair of total anomalous pulmonary venous drainage Atrioventricular septal defect and tetralogy repair Atrioventricular septal defect (complete) repair Atrioventricular septal defect (partial) repair Aortic valvotomy Aortic valvoplasty Anomalous coronary artery repair Cor triatriatum repair Arterial switch + VSD closure Arterial switch (for isolated transposition) Pulmonary atresia VSD repair Pulmonary valve replacement Tetralogy with absent pulmonary valve repair Tetralogy repair Isolated coarctation repair Aortic Valve Replacement - non Ross Supravalvar aortic stenosis repair Rastelli procedure Aortic valve replacement - Ross Aortic root replacement (not Ross) Subvalvar aortic stenosis repair Aortopulmonary window repair ASD repair VSD Repair Arterial shunt Isolated Pulmonary artery band PDA ligation (surgical) Transcatheter PVR VSD closure (catheter) Aortic balloon valvotomy Coarctation angioplasty Pulmonary artery stenting ASD closure (catheter) PDA closure (catheter) Recoarctation angioplasty Pulmonary balloon valvoplasty Blade atrial septostomy Coarctation stenting PFO closure (catheter) Pulmonary valvotomy (radiofrequency) Duct Stenting RVOT Stenting Radiofrequency ablation for supraventricular tachycardia Implantable Cardioverter Defibrillator

Eligibility Criteria

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Inclusion Criteria

Patient, judged by multidisciplinary team meeting as unsuitable for the procedure

Exclusion Criteria

Patient, judged by multidisciplinary team meeting, as unsuitable for the procedure
Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Society for Cardiothoracic Surgery in Great Britain & Ireland

UNKNOWN

Sponsor Role collaborator

British Congenital Cardiac Association

UNKNOWN

Sponsor Role collaborator

University College, London

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Rodney Franklin, MD

Role: STUDY_CHAIR

Royal Brompton & Harefield NHS Foundation Trust

Locations

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Southampton General Hospital

Southampton, Hampshire, United Kingdom

Site Status RECRUITING

Royal Brompton Hospital

London, London, United Kingdom

Site Status RECRUITING

The Harley Street Clinic

London, London, United Kingdom

Site Status RECRUITING

Alder Hey Hospital

Liverpool, Merseyside, United Kingdom

Site Status RECRUITING

Royal Victoria Hospital Belfast

Belfast, Northern Ireland, United Kingdom

Site Status RECRUITING

John Radcliffe Hospital

Oxford, Oxfordshire, United Kingdom

Site Status RECRUITING

Freeman Hospital

Newcastle upon Tyne, Tyne and Wear, United Kingdom

Site Status RECRUITING

Leeds General Infirmary

Leeds, West Yorkshire, United Kingdom

Site Status RECRUITING

Queen Elizabeth Hospital (Edgbaston)

Birmingham, , United Kingdom

Site Status RECRUITING

The Heart Hospital

London, , United Kingdom

Site Status RECRUITING

Countries

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United Kingdom

Central Contacts

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James CHAL, MHlthMgmnt

Role: CONTACT

Phone: 0203 549 5621

Email: [email protected]

References

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Pagel C, Utley M, Crowe S, Witter T, Anderson D, Samson R, McLean A, Banks V, Tsang V, Brown K. Real time monitoring of risk-adjusted paediatric cardiac surgery outcomes using variable life-adjusted display: implementation in three UK centres. Heart. 2013 Oct;99(19):1445-50. doi: 10.1136/heartjnl-2013-303671. Epub 2013 Apr 5.

Reference Type BACKGROUND
PMID: 23564473 (View on PubMed)

Other Identifiers

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NICOR-CONGENITAL

Identifier Type: -

Identifier Source: org_study_id