September 2024
Positive Recommendation from NICE on Phrenic Nerve Pacing as a Valid Option for the Treatment of CCHS
We are pleased to report that the National Institute for Health Care Excellence (NICE) has provided a positive recommendation for the use of phrenic nerve pacing as an option to treat patients with congenital central hypoventilation syndrome (CCHS).
This new guidance acknowledges the impact of CCHS on quality of life for people who are ventilator or mask-dependent and the need for alternative options.
James Oakley, Founder of Keep Me Breathing, commented, “We are delighted to have this recommendation as it means we are a step closer to ensuring improved access to alternative methods of treatment for patients who currently rely on mechanical ventilation to support their breathing.”
With no cure for CCHS, Keep Me Breathing was set up with a single goal – to research and develop new and advanced treatments for CCHS patients that will improve their quality of life and allow them to live more normal lives. Through its research and development programme, the charity is already investigating harnessing phrenic pacer-technology to develop an advanced, fully implantable device that aims to replace the ventilator for appropriate patients.
Phrenic nerve pacing is a procedure that involves direct stimulation of the phrenic nerve to send a signal to the diaphragm to contract, producing the inhalation phase of breathing.
Follow this link to read the full NICE Guidance which includes more details around the implementation of the guidance.
