Contemporary Treatment Strategies for Heart Failure in ACHD patients
Research type
Research Study
Full title
Evaluation of Contemporary Outcomes of Treatment Strategies for Heart Failure in Adults with Congenital Heart Disease
IRAS ID
339068
Contact name
Catherine Sinclair
Contact email
Sponsor organisation
Golden Jubilee University National Hospital
Duration of Study in the UK
6 years, 11 months, 31 days
Research summary
Heart failure (HF) is the leading cause of indisposition and death in adults with congenital heart disease (ACHD). Currently, the outcomes of having HF in ACHD are poorly described in the medical literature, and there are no evidence-based medical treatment options for these ACHD patients. This project aims to evaluate the outcomes in ACHD patients with HF, and study the treatment strategies that are currently being used. A retrospective multicentre study will be conducted at three specialised ACHD centres, including Scotland and 2 sites in the Netherlands. All ACHD patients who have been treated for documented HF will be included and clinical data will be collected retrospectively from the medical health records. The primary focus of the project will be the evaluation of the clinical outcomes associated with HF in ACHD patients, including death, heart related hospitalisation, heart transplantation, mechanical circulatory assist device implantation, and changes in markers of HF severity that are routinely used by ACHD physicians. Secondly, the treatment strategies including HF medication prescription patterns, and surgical and catheter-based interventions will be evaluated to provide an overview of current practice. To evaluate the safety, tolerability, and effectiveness of various treatment strategies, longitudinal changes will be evaluated by collecting and comparing clinical information, blood markers of HF severity, cardiac imaging such as echo or MRI or CT and Xrays, and other relevant outcomes before and after starting treatment. This project allows us to evaluate our current care strategies for ACHD patients with HF, and to see how effective these strategies are. Based on preliminary work, we expect to evaluate approximately 250-300 patients during the planned time period cared for at the Golden Jubilee University National Hospital. A co-sponsor arrangement is in currently being set up between the GJNUH and CAHAL.
REC name
South West - Central Bristol Research Ethics Committee
REC reference
24/SW/0036
Date of REC Opinion
3 Apr 2024
REC opinion
Favourable Opinion