Congenital Heart Audit: Measuring Progress In Outcomes Nationally (CHAMPION) and LAUNCHES QI: Linking AUdit and National datasets in Congenital HEart Services for Quality Improvement.

Data-sharing agreement from NHS England Data Uses Register. Evidence status: source reported.

Organisation: UNIVERSITY COLLEGE LONDON (UCL)
Published: 2026-10-16
Source reference: DARS-NIC-234297-P4M5G-v5.2
Jurisdiction: England
Licence: Open Government Licence v3.0, subject to NHS England terms and exclusions

Register reference: DARS-NIC-234297-P4M5G-v5.2
Applicant type: Academic
Data controllers: UNIVERSITY COLLEGE LONDON (UCL)
Agreement period: 2026-10-16 to 2027-12-17
For commercial purposes (as marked in the register): No
Release files listed by NHS England: 0

Data approved

Civil Registrations of Death - Secondary Care Cut
HES:Civil Registration (Deaths) bridge
HES-ID to MPS-ID HES Accident and Emergency
HES-ID to MPS-ID HES Admitted Patient Care
HES-ID to MPS-ID HES Outpatients
Hospital Episode Statistics Accident and Emergency (HES A and E)
Hospital Episode Statistics Admitted Patient Care (HES APC)
Hospital Episode Statistics Outpatients (HES OP)
NICOR National Congenital Heart Disease

Objective, as published

University College London (UCL) require access to NHS England data for the purpose of the Congenital Heart Audit: Measuring Progress In Outcomes Nationally (CHAMPION) research project and LAUNCHES QI: Linking Audit and National datasets in Congenital Heart Services for Quality Improvement. The CHAMPION study uses the same data extracted from LAUNCHES QI. LAUNCHES QI: Linking Audit and National datasets in Congenital Heart Services for Quality Improvement” aimed to indirectly improve services for congenital heart disease (CHD) by providing the first description of how CHD patients interact with the NHS acute sector and where variation in outcomes or service use exist. In 2019 an amendment was approved to reuse the LAUNCHES dataset for a new study called CHAMPION “Congenital Heart Audit: Measuring Progress in Outcomes Nationally”. LAUNCHES QI aims to indirectly improve services for congenital heart disease (CHD)* by providing the first description of how CHD patients interact with the NHS acute sector and where variation in outcomes or service use exist. This information is the first crucial step in supporting service improvement by building the evidence base on which aspects of the current service offer the most potential for improvement programmes. The team linked for the first time NCHDA (National Congenital Heart Disease Audit), PICANet (paediatric intensive care audit), ICNARC CMP (Intensive Care National Audit and Research Centre Case Mix Programme - audit of patient out…

Expected benefits, as published

The LAUNCHES QI study addresses important areas related to services in congenital heart disease (CHD) about which there is currently little or no information. In response to national recognition of the urgent need, the study is expected to provide information regarding better system measures for identifying opportunities for quality improvement, trajectories of service use, and variation in CHD service provision. The main areas of uncertainty addressed by the LAUNCHES study are: 1. There is little known about long term survival and outcomes for CHD patients. 2. Little is known about patient trajectories through the NHS for lifelong conditions like CHD (i.e. for a given patient, their outcomes and sequence of contacts with the NHS over time). The study is expected to generate important und…

Benefits reported by the applicant

Data provided for the LAUNCHES-QI study in September 2020, under Version 0 of this Data Sharing Agreement, was incomplete was re-supplied under Version 1 of this Data Sharing Agreement. The corrected extract was received in February 2022. Outputs and yielded benefits LAUNCHES We have published nine peer-reviewed publications in leading journals (e.g. Heart, Journal of the American College of Cardiology) to date, with four more in progress/under review. We have also presented the work at national and international conferences. We have added a great deal to existing knowledge around the course of congenital heart disease over the longer term including: • Defining sentinel diagnoses to understand resource use and outcomes over the life course. • The first in depth national study looking at t…

This is the applicant's own account; OpenHDI has not verified it.

Source: https://digital.nhs.uk/services/data-access-request-service-dars/data-uses-register. Captured 2026-11-05.

Limitations: Data-sharing agreement as published in NHS England's Data Uses Register. An agreement permits access; actual data releases are listed separately. Expected and yielded benefits are as reported by the applicant and have not been independently verified. Long text fields can be cut off in NHS England's spreadsheet export at Excel's 32,767-character cell limit.