Head support system HeadUp Collar: Communication at eye level

Anita Ogale: Many currently available conventional neck support systems for patients with motor neuron diseases (MND) – including ALS – resemble the cervical braces patients must wear to heal from a whiplash injury – a car accident, for example – or foam cervical collars used to treat cranial cervical syndrome. By design, a whiplash neck support brace is very rigid and restricts patients from moving their head. Meanwhile, the softer cervical collars provide limited support and cause patients to sweat under the foam due to heat buildup, making them feel uncomfortable in the process.

Unlike these conventional neck support systems, the HeadUp Collar is a modular head support system, which offers personalized head support as the device can be molded to the individual patient, incorporating desired direction and thickness. The HeadUp Collar offers the best possible support to the collection of small muscles in the neck which are responsible for keeping the head tilted up, while it provides assistance with head rotation and mobility. Another distinguishing feature of the HeadUp Collar is its temperature regulating material. Originally developed for NASA, it makes the brace very comfortable to wear.

How can the HeadUp Collar be customized to each patient?

Ogale: The HeadUp Collar modular head support system can be fully adapted to individual needs as it pertains to strength and support direction. The device comes with a variety of support struts in 2 different thicknesses (two and three Millimeters). They are applied to the support module to provide the personalized level of support or correction the patient needs. An orthopedic technician performs the first patient fitting. The HeadUp Collar can also support patients with a tracheostoma as the material can be cut to fit around the opening.

How did the idea for the HeadUp Collar come about and how was it developed?

Ogale: The HeadUp Collar is the result of a five-year project led by the University of Sheffield, the National Institute for Health Research of the UK (NIHR) and the Motor Neurone Disease Association. Professor Chris McDermott, a Professor of Translational Neurobiology at the University of Sheffield, and his team wanted to transform the lives of their patients by giving them some independence back: "The Head Up collar was very much designed by patients for patients. We listened to what matters to them and what will have the greatest impact on their quality of life." Patients with motor neurone disease helped to design the neck and head support system that offers the personalized support the patient involvement group identified in a study. Since 2018, the resulting HeadUp Collar has offered patients in the UK – and now in Germany – increased support for the neck and head while improving mobility and flexibility and ensuring comfortable wearing.

How does this neck support system help patients to lead a more comfortable life?

Ogale: In ALS, the muscles around the head and neck grow weaker over time, eventually leading to a perpetual head droop with the chin resting on the chest. By supporting the neck muscles, the HeadUp Collar assists activities of daily living (ADLs) such as eating and drinking and facilitates self-determination, thus creating communication on an equal footing with the other person. A better head posture can also improve respiratory function by relaxing the respective muscles, making it easier to swallow. The HeadUp Collar can also alleviate neck pain caused by misalignment.

How does the HeadUp Collar fit into ProWalk's product portfolio and corporate identity?

Ogale: Our ProWalk product portfolio is comprised of different resources for people with neurological diseases, all of which aim to improve patients’ quality of everyday life. The HeadUp Collar was specifically designed to meet the needs of those with ALS and patients with neuromuscular and progressive neurodegenerative diseases. The close collaboration with affected people during product development ensured that all factors that are most important to patients were incorporated and meet their daily needs. The neck and head support system is designed to specifically ease neck pain and facilitate activities of daily living such as eating and social interaction and communication at eye level for patients with motor neurone disease (MND). The ultimate goal is to improve patients' quality of life and help foster a life of dignity and self-respect despite the disease.