MADE WITH AND FOR PEOPLE WITH PARKINSON’S
Frequently Asked Questions
Please find below our FAQ, giving answers to the questions which we are asked most frequently. These include how the device is worn and when it will be available for use. If you have a question that isn’t answered in our FAQ, please get in touch and one of our team will get back to you.
We have had the privilege of working with people with Parkinson’s since 2014. The stories and experiences have moved us and we think it is important to help those with a condition which currently has no cure. We have gained amazing insights from participants, their loved ones and specialists. With the CUE1 device, we have a chance at alleviating some of the challenging symptoms of Parkinson’s disease in a novel and non-invasive way. We are committed to making a real positive impact and delivering the device directly from our research to the hands of people with Parkinson’s, with the community involved at every step of our process.
Movement itself involves a complex interplay of the nervous system and the musculoskeletal system. The scientific community’s understanding of movement has developed significantly over the last few decades. We are increasingly appreciating the importance of the sensory system and there is growing evidence that modulation of this can change patterns of brain activity and improve movement across different tasks. It is a non-invasive, non-pharmacological intervention that can improve symptoms above medication alone.
The technology used in the CUE1 is based on feedback, user testing and published research. Our user testing showed positive results with the CUE1 device across a range of motor tasks including tapping, walking and more real-life experiments. Our participants covered most of the Hoehn Yahr stages of Parkinson’s Disease and included someone who had had DBS surgery. Although we had positive results in all participants, we aim to carry out further testing with more people and over a longer duration. We will continue to develop the CUE1 even after release to explore just how far we can improve symptoms and quality of life and tailor it to the feedback of users.
We have found that slowness, stiffness and freezing are generally better improved while we have seen less indication that tremor is improved so far. Some users have reported that their tremors feel reduced while using CUE1, but we are yet to formally measure this and believe it may be due to the reduction in rigidity.
The CUE1 can be worn in two different ways:
1) It can be attached to your body via an adhesive patch. These patches will come with the device, and are medical-grade, high-quality adhesives. They are sweatproof and waterproof, and are very unlikely to cause any irritation or harm to the skin. Each patch can be used for around 2 weeks, after which time it can be easily removed from your person. The patch can technically be placed anywhere on your body, with the CUE1 still remaining effective to a degree. We would recommend placing it on your sternum, as we have found through our own testing that the CUE1 is most effective when placed here.
2) We have also added the option of wearing the CUE1 via a strap. This option is still under development, but is something we are very excited to show you once it has been finalised :).
We are committed to bringing the CUE1 to people as soon as possible. Our launch in the UK & EU is currently scheduled for late 2021, upon which the CUE1 will be made available to buy from our website. We are working hard to launch in other countries, such as the US and Australia, and are currently undergoing the necessary regulatory procedures to make this happen. We will keep you updated on this.
By our current estimate, the CUE1 will RRP for £295 upon its initial launch. Please note that this is only an estimate, and may be subject to change due to other factors, such as alterations in the manufacturing process.
Whilst our testing has primarily focused on the CUE1’s beneficial effects on Parkinson’s symptoms, we are preparing to test whether it may improve other conditions. There is existing evidence that the therapies utilised by the CUE1 (such as vibrotactile stimulation) can benefit conditions such as stammering, multiple sclerosis and stroke. Investigating this is important to us, and is something which we will continually update you on as we find out more.
The CUE1’s compatibility with DBS is a crucial question, and one which we are currently investigating. If you are unsure about using the CUE1 in any way, our advice would always be to consult your clinician. Regulations also dictate that the DBS device manufacturer should test the compatibility of the CUE1 with their specific device. We are already in discussion with major DBS device manufacturers but we ask that you also consult with the manufacturer of your specific device prior to using the CUE1.
In terms of effectiveness, we are currently planning further testing to determine the full benefits which the CUE1 may pose. In our previous testing, we have had one participant who had DBS. When using the CUE1, they did show signs of improvement, which is very promising.
Using the CUE1 with a pacemaker or ICD (defibrillator) is a topic which we are currently investigating further, and eager to learn more about. If you are unsure, we would always recommend that you seek the advice of your dedicated Parkinson’s specialist, and also with the manufacturer of your pacemaker. If you would like our help in facilitating any such discussions, please contact us on firstname.lastname@example.org
- We are always eager to learn more about how the CUE1 works, its effectiveness, and how it could be improved. To facilitate this, we are continuously organising new testing rounds, and there will always be new and exciting opportunities for you to become involved with Charco. If you are based in the UK and would like to contribute to our research, we would love to hear from you! We recruit participants for trials & testing on a rolling, ad hoc basis, and so even if you do not have the chance to participate in one round, there will always be new opportunities to do so in the future. To express your interest, please enter your details here, and to keep regularly updated, please sign up to our community newsletter.