Thoughtwired

Researchers

Thought-Wired, are a team of 5 consisting of:

Dr James Pau – Biomedical Engineer, Co-founder

Stuart McGill – Cognitive Neuroscientist

Sarvnaz Taherian – Research Psychologist, Co-founder

Sean Carmichael – Software Developer

Dmitry Selitskiy – CEO, Co-founder

They are based at Hobsonville Point Secondary School, Auckland, New Zealand

Current Research

The team are currently researching and developing a brain-computer interface for people with severe physical disabilities, such as Motor Neuron Disease and Cerebral Palsy. The main aim is to create a completely physical free communication system, that utilises the electrical signals of the brain to control applications on a computer.

They have already done several studies to help understand the design requirements to build this system – including software, hardware and training/support components. The current study will be an evaluative, observational study that focuses on the experience of using the current prototype of this technology on people with Motor Neuron Disease.

The methodology is user-centred and incorporates both quantitative and qualitative methods. They want to look at how the training may help people master the technology (quantitative) and how they perceived using and interacting with the system (qualitative).

With the results of this study, they aim to improve upon their current prototype, so that it better meets the needs of the users.

Relationship to MND

Due to the progressive nature of motor neuron disease, people may get to a stage where no existing assistive technology can improve their functional abilities or enable them to communicate. Because brain-computer interfaces only rely on brain activity, it has the potential to assist people who have lost physical function and enable them to continue to participate and communicate later in the stages of the disease.

Future Research

They may continue to test re-iterations of the technology design, as they have noticed that they learn the most when working with the actual customers.

Identified Gaps

It would be good to get an understanding of how many people currently live with MND, and what stages of the disease.

The Team

Thoughtwired are a multidisciplinary team who have been developing this technology for the past 5 years. There idea was inspired by the CEO, Dmitry, who has a cousin with severe cerebral palsy. No existing form of assistive technology works for him, but from his interactions, they know that he has a sound mind- he just lacks the physical ability to communicate his thoughts. Dmitry came across a TED talk that discussed this technology, which inspired him to try a create something useful for people who may be in a similar situation to his cousin.

From here, Sarvnaz and James came on board to help develop and test the proof of concept. Both have backgrounds in academia at the University of Auckland, and approached the development through psychological and technical approach. This meant that from the inception, they have been working with the disability community to understand the needs of all the people who would be using and interacting with the technology.

Stuart and Sean joined us in 2017 to accelerate our research and development cycles. Stuart leads the cognitive neuroscience research, to have a better understanding of how to capture neuro-data to improve our technology. Sean is a software developer, who puts together all of our design requirements.

Contact Details

e: hello@thought-wired.com

w: http://www.thought-wired.com/ 

NZ MND Patient Registry

Kerry Walker is Curator of the NZ MND Registry. Kerry has worked in many areas of scientific research including, molecular biological lab research, clinical trials for new medicines and large-scale epidemiological studies. She has been involved in this Registry from its inception and manages all aspects of the study from ethics and regulatory requirements, to patient recruitment and data management.

Dr Richard Roxburgh is the NZ MND Registry Principal Investigator. He is a neurologist at Auckland City Hospital and Associate Professor at the University of Auckland. He specialises in seeing patients with neurogenetic disease. One of his major research roles has been the establishment (together with the Muscular Dystrophy Association) of the New Zealand Neuromuscular Disease Registry, of which he is the principal investigator. This registry is five years old and has recruited over one thousand New Zealand patients, more than half whom have been enrolled through this registry into research studies. His principal motivation is to have enough information available on patientsĀ so they are “trial ready” as trials become available. It is this registry expertise that Richard brings to bear in establishing the NZ MND Registry.

Motor Neuron Disease New ZealandĀ has played a pivotal role in the establishment of the Registry. It was MND NZ who identified a desire amongst their members to participate in research, identified that a registry was the best way to facilitate this, and then sought out the expertise and resources to make it happen. The registry is currently funded by MND NZ through fundraising.

Purpose

Because MND is not common, and New Zealand only has a small population, finding enough participants for a study about MND can be difficult. Without a registry to gather details in one place, finding enough patients for a meaningful study could take years, potentially delaying the testing of new treatments or the advancement of knowledge of MND. To resolve this issue, a patient registry for New Zealanders with motor neuron disease has been established. The NZ MND Patient Registry collects demographic and clinical information about people with MND who have chosen to enrol. The aim of the registry is to help people with MND to participate in national and international clinical trials and research about MND. It also aims to help researchers by assisting them to plan their research and helping to find potential participants.

Relationship to MND

The registry enrols anyone who is diagnosed with motor neuron disease, or anyone who has a genetic form of motor neuron disease in their family. People with family members who have an expansion in the specific gene that can cause MND or frontotemporal dementia, C9orf72, can also participate, even if their affected family members have only had dementia symptoms.

Research

The Registry aims to facilitate research and the participation of people with MND in research, rather than creating its own research.

Collaborations

The NZ MND Patient Registry is working with the Australian Motor Neurone Disease Registry, using the same digital platform to store clinical data.

Resources

The NZ MND Patient registry is a member of the Pan-Asian Consortium for Treatment and Research in ALS (PACTALS).

Contact Details

New Zealand Motor Neurone Disease Registry
Neurology Department
Auckland City Hospital
Private Bag 92024
Auckland 1142
Ph: 0800 MND REGISTRY
Mobile: 027 561 7332
Email address: mndregistry@adhb.govt.nz
Website: www.mnda.org.nz/registry/