Research Projects awarded by the CCHS Network in 2025 (start date January 1, 2026)

Congenital Central Hypoventilation Syndrome (CCHS) is a rare genetic condition that affects how the body controls breathing. People with CCHS lack the automatic response that makes most of us breathe more when carbon dioxide (CO₂) builds up in our blood. This is particularly dangerous during sleep, when patients may stop breathing adequately without realizing it. Because their bodies don’t sense rising CO₂ levels, these patients require lifelong breathing support and careful monitoring to stay safe.

Currently, doctors have very limited options for monitoring CO₂ in CCHS patients. The most accurate method involves drawing blood from arteries, which is painful, invasive, and requires inserting special lines. Other available methods measure CO₂ in exhaled breath or through the skin, but these techniques are indirect and often inaccurate. Some require heating the skin to high temperatures or don’t work well during normal daily activities. This leaves a critical gap in patient care, as continuous and reliable CO₂ monitoring is essential for managing CCHS safely, especially when patients are at home or during critical periods like illness.

Dr. Hadar Ben-Yoav and his research team at Ben-Gurion University of the Negev are proposing to develop a small sensor that can be placed just under the skin to continuously monitor CO₂ levels in real time. Similar to the continuous glucose monitors used by people with diabetes, this sensor would provide constant feedback without the need for repeated blood tests or cumbersome equipment. The sensor works using electrochemical technology, essentially detecting CO₂ molecules in the fluid that surrounds cells beneath the skin. The research team will build the sensor using platinum electrodes and special membranes designed to allow CO₂ through while blocking other substances. They will also apply a protective coating to prevent proteins and cells from sticking to the sensor over time, which would interfere with its accuracy.

The project will unfold over twelve months in three main phases. First, the team will fabricate and characterize the sensor components, including optimizing the electrode materials and electrolyte systems. Second, they will evaluate how well the sensor performs by testing it with different CO₂ concentrations that match what occurs in human tissue. Finally, they will assess whether other molecules naturally present in the body—such as glucose, lactate, and oxygen—interfere with the sensor’s ability to accurately detect CO₂. The team has identified potential challenges and backup strategies, such as using different electrode materials or adding multiple sensors to correct for any interference.

A reliable subcutaneous CO₂ sensor would represent a major breakthrough for CCHS patients and their families. It would enable timely detection of dangerous CO₂ buildup, allowing caregivers to intervene before a crisis develops. Doctors could use the real-time data to fine-tune breathing support machines more precisely, helping to avoid both under-ventilation and over-ventilation. The device would make it safer for patients to transition from hospital care to home care, particularly important for infants and children newly diagnosed with CCHS. Beyond the immediate safety benefits, continuous monitoring would reduce anxiety for families, decrease emergency room visits, and ultimately improve patients’ quality of life by enabling more freedom in daily activities. This research represents the crucial first step toward developing a practical, user-friendly monitoring device that could transform how CCHS is managed clinically.