Long term outcome for patients with PA/IVS
Research type
Research Study
Full title
Follow-up study of patients with Pulmonary Atresia with Intact Ventricular Septum: an assessment of form and function.
IRAS ID
157782
Contact name
Reza Razavi
Contact email
Research summary
Pulmonary valve atresia with intact ventricular septum (PAIVS) is a rare but varied condition with an incidence of 3-8 per 100,000 births. It is characterised by a sealed-shut pulmonary valve and a varying degree of changes within the right ventricle, which has had to pump against a closed valve during fetal life.
In most cases, the initial treatment for PAIVS is to establish flow through the pulmonary valve, opening the valve via open heart surgically or by the newer technique of keyhole (catheter) radiofrequency perforation. However, clinical concerns evolve in later life as the patient heads towards adulthood, and frequently multiple interventions are required. However, there is very little published data for clinicians to base these decisions upon, especially for the patient population that underwent the newer keyhole procedure. This institution is in a unique position to study this patient population, having performed the first keyhole procedures for PAIVS in the world. This study aims to evaluate key clinical parameters in an effort to understand the physiology and outcomes of this patient group, and inform future decision making.
REC name
West Midlands - Black Country Research Ethics Committee
REC reference
14/WM/1087
Date of REC Opinion
5 Aug 2014
REC opinion
Favourable Opinion