Centre for Brain Research

Researcher

Associate Professor Henry Waldvogel

Current Research

Assoc. Prof. Henry Waldvogel has helped develop the Neurological Foundation Douglas Human Brain Bank in the Centre for Brain Research at the University of Auckland. This is where brains with neurological disorders such as Alzheimer’s,  Parkinson’s, Huntington’s and Motor Neuron diseases as well as other brain disorders are specially treated and stored for use in scientific studies into these brain diseases. His specialty is immunohistochemical staining of sections of brain tissue and spinal cord to detect molecules in the brain which are important for identifying different brain cells and markers of neurodegenerative diseases.

Relationship to MND

This brain bank has tissue stored from patients who have died of MND and donated their brains to science.

Future Research

Assoc. Prof. Henry Waldvogel and his team will be working with Dr. Emma Scotter and her group studying the pathological changes in the MND cases that he has stored in the Brain Bank.

Collaborations

Dr. Emma Scotter and her team of researchers and students

Resource Gaps

Having a detailed clinical history for the cases of MND that they receive at the brain bank is very important and currently not available.

The Team

Assoc. Prof. Henry Waldvogel is part of a larger team including; Director – Distinguished Professor Sir Richard Faull, Associate Director – Associate Professor Maurice Curtis, Brain Bank Manager, Marika Eszes and a group of Post doctoral fellows, postgraduate students including doctoral students, Masters and BSc Biomedical honours students who are working on a number of projects on the diseases outlined above.

Contact

Associate Professor Henry Waldvogel Centre for Brain Research and Department of Anatomy and Medical Imaging Faculty of Medical and Health Sciences University of Auckland 85 Park Road Grafton 1023 Private Bag 92019 Auckland New Zealand phone 0064 9 3737599 ext 86051 direct 0064 9 9236051

Communication Disorders Canterbury University

Researcher

Dean Sutherland, PhD
Senior Lecturer
Dept of Communication disorders
University of Canterbury

Current Research

Current research focuses on supporting adults with complex motor and speech difficulties to be able to have access to effective communication options. There are two aspects to this research. The first study includes testing a voice-banking protocol and voice donors and creating ‘Kiwi-accented’ voices that can be used on a variety of speech-generating communication systems for people who rely on these devices to communicate.

The second study is comparing the efficiency and user experience of 3 different access methods for spelling words using alternative communication systems. The 3 access methods are ‘eye gaze’, ‘eye tracking’ and computer-based spelling system controlled by a user’s ‘thoughts’ (this involves measurement of the well-documented P300 brainwave form).

Relationship to MND

Many people with motor neuron disease are likely to lose their ability to speak. They are candidates for using alternative and augmentative forms of communication. Accessing AAC systems with limited motor movement requires ‘alternative access’ methods (study 2). Once a speech-generating device is accessible, having access to a voice that enable users to retain a sense of identity is an important aspect of communication and well-being (study 1).

Future Research

Both studies described above have potential for further flow-on research. For example, voice banking experiences of people with MND, AAC system use by people with MND.

Collaborations

Michelle Westley, Masters student, Department of Communication Disorders, University of Canterbury

Claire Elliott, Honours students, Department of Communication Disorders, University of Canterbury

Grace Eriksen, Honours students, Department of Communication Disorders, University of Canterbury

Dr Catherine Theys, Lecturer, Department of Communication Disorders, University of Canterbury

The Team

Dr Theys is overseeing the comparison of AAC access methods study which is being undertaken by Claire Elliott. Michelle Westley and Grace Eriksen are the students completing the ‘Kiwi-voices’ voice banking project.

Contact

E: dean.sutherland@canterbury.ac.nz
P: 03-369-5090

Respiratory Physiology Lab Christchurch Hospital

Researchers

The Respiratory Physiology Laboratory team consists of qualified respiratory physiologists mainly employed to conduct pulmonary function tests but also contribute to research of pulmonary function to assist quality improvement and the introduction of new tests.

Jun Yang, Respiratory Physiologist
Heather Brunton, MND Specialist nurse
Emily Ingram, Respiratory Physiologist
Dr. Chris Drennan, Respiratory Physician
Dr Rachel Wiseman, Respiratory Physician
Dr Maureen Swanney, Scientific director, Respiratory Physiology Laboratory

Current Research

Title: The role of respiratory function tests in monitoring patients with motor neuron disease: a prospective observational study.

Background and aims: MND is a group of progressive neurological disorders that destroy motor neurons. Patients gradually lose the function of speaking/swallowing, breathing and general movement of the body. The disease is incurable and most patients die from respiratory failure due to respiratory muscle weakness. Although multiple respiratory function tests can be performed in MND patients, their role in determining respiratory muscle involvement and monitoring disease progression is unclear. The present study is to conduct a prospective observational study to identify optimal respiratory function test(s) in terms of feasibility and clinical value in monitoring MND.

Methods: Fifteen newly diagnosed MND patients will be recruited, baseline respiratory function tests will be measured. The tests will be repeated every 3 months. A questionnaire assessing symptom/disease progression will also be filled out in each testing session. We aim at monitoring patients’ pulmonary function for as long as possible. However, monitoring will be terminated when pulmonary function tests are deemed to be no longer clinically appropriate determined by the investigators or when the patient is unwilling to continue. The relationship between the decline in respiratory function and the progression in disease will be explored.

Relationship to MND

The study directly focuses on MND patients. We hope to identify one or more respiratory function test(s) which can be used clinically to predict disease progression and sudden deterioration so that possible early intervention can be made.

Future Research

The current study is a step forward of our previous research which demonstrated benefits of using a face mask to perform spirometry in MND patients. The plans for the future studies will be determined by the findings of the present study with a general direction of optimisation of respiratory function testing in MND patients.

Contact

Respiratory Physiology Laboratory
4th Floor Riverside Building
Christchurch Hospital
Private Bag 4710
Christchurch 8140, New Zealand
T: 03 3640874
F: 03 3640878

The University of Auckland Swallowing Research Laboratory

The Team at The University of Auckland Swallowing Research Laboratory 2017

Researchers

The University of Auckland Swallowing Research Laboratory is currently located at Tamaki Campus in the Discipline of Speech Science, School of Psychology, Faculty of Science and sits as one of the Clinical Neuroscience Research Teams in the Centre of Brain Research.

Dr Anna Miles, PhD, a speech-language therapist leads the Swallowing Research Laboratory in close collaboration with Dr Jacqui Allen, a Consultant Laryngologist in the Surgical Department of the Faculty of Medical and Health Sciences.

Current Research

The Swallowing Research Laboratory at The University of Auckland strives to improve the lives of people with swallowing difficulties through improved assessment, treatment and medical education in the field of dysphagia. The laboratory hopes to reduce the risks of pneumonia and death associated with swallowing difficulties as well as improve the quality of life of people who struggle with this condition.

Relationship to MND

The team currently collects data on patients referred for swallowing assessment across all aetiologies including motor neuron disease. This allows us to assess the specific effects of motor neuron disease on swallowing in comparison to other diseases and to the healthy population. A number of our treatment studies have potential to be effective for people with motor neuron disease and we are currently seeking doctoral funding to support this work.

Collaborations

The University of Auckland Swallowing Research Laboratory has strong international collaborations with University California, Davis and University of Queensland among others. Internally, it works between Faculty of Medical Health Sciences, Food Science and Psychology.

Resources

The Swallowing Research Laboratory has an increasing database of videofluoroscopic swallowing studies and endoscopic swallowing studies of people with motor neuron disease carefully mapping swallowing physiology across and within patients.

The Team

The Swallowing Research Laboratory is an enthusiastic group of academics, clinicians, doctoral students, medical students and speech-language therapy students.

Contact

Anna Miles PhD
Speech-language Therapist
Professional Standards Portfolio Holder, Executive Council, New Zealand Speech-language Therapists’ Association
Expert Advisor to New Zealand Speech-language Therapists’ Association (NZSTA) – Adult Dysphagia

Senior Lecturer, Speech Science, School of Psychology
Leading psychological science, scholarship and practice

Tamaki Campus (Bld 721 Rm 314)
261 Morrin Road, Glen Innes
The University of Auckland
Private Bag 92019, Auckland, NEW ZEALAND
Phone: +64 9 923 8177 Fax: +64 9 373 7902
Email: a.miles@auckland.ac.nz    Website: www.fmhs.auckland.ac.nz/

 

 

Rose Centre for Stroke Recovery and Research

Researchers

Paige Thomas, PhD Candidate  (photo provided)
Rose Centre for Stroke Recovery and Research
Department of Communication Disorders
University of Canterbury, Christchurch

Primary Supervisor: Prof. Maggie Lee Huckabee
Director of the Rose Centre for Stroke Recovery and Research
Department of Communication Disorders
University of Canterbury, Christchurch

Current Research

Paige and the team are conducting a proof of concept study to assess the impact of swallowing skill training protocol in patients with Amyotrophic Lateral Sclerosis (ALS).

Currently, patients with ALS are not considered candidates for rehabilitation of swallowing; this is therefore early research into the possible benefits of rehabilitation.

Paige Thomas

The therapy is a skill training protocol for swallowing through the Biofeedback in Strength and Skill Training (BiSSkiT) software. This protocol uses surface electromyography (sEMG) which measures muscle activity from the skins surface and displays it on a computer monitor. SEMG electrodes are placed over the submental muscles which contract during swallowing resulting in a peak in the waveform on the screen. With the use of sEMG, participants are able to visualise and alter their muscle activity while swallowing. To make this task challenging, a target box will appear in a random position on the screen and participants will attempt swallow so that the peak of their swallow waveform lands within the target box. This challenging aspect of the therapy is intended to help to encourage cortical control of swallowing.

Relationship to MND

The research investigates prolonging functional swallowing and quality of life in patients with the Amyotrophic Lateral Sclerosis type of Motor Neuron Disease.

Future Research

The current research is a proof of concept study. Further research will be conducted into swallowing therapy in patients with ALS.

Collaborations

Paige and the team are collaborating with Dr. Sebastian Doeltgen from Flinders University and Dr. Deanna Britton from Portland State University, who is consulting on this project.

Resources

The MND Patient Registry and MND New Zealand are assisting with participant recruitment.

Resource Gaps

More funding for MND research would help to increase both the quantity and quality of MND research in New Zealand.

The Team

Prof. Maggie-Lee Huckabee, senior supervisor of research project, oversees all stages of planning and development of research as well as data collection and analysis. Director of the Rose Centre for Stroke Recovery and Research, University of Canterbury.

Dr. Phoebe Macrae, co-supervisor of research project. Deputy Director of the Rose Centre for Stroke Recovery and Research, University of Canterbury.

Dr. Michelle Troche, associate supervisor of research project, will oversee data collection in New York. Director of the Laboratory for the Study of Upper Airway Dysfunction, Columbia University.

The Rose Centre

Emma Burnip, Co-investigator, PhD candidate, performing data collection in New Zealand. Rose Centre for Stroke Recovery and Research, University of Canterbury.

Contact

The University of Canterbury Rose Centre for Stroke Recovery and Research
Leinster Chambers, Level One, 249 Papanui Road
Christchurch 8140
New Zealand

Paige Thomas
p: +64 3 369 2385
e: paige.thomas@pg.canterbury.ac.nz

Prof. Maggie-Lee Huckabee
p: +64 3 369 5124
e: Maggie-lee.huckabee@canterbury.ac.nz

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 patients 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 Zealand 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/

Scotter Lab

Researchers

Dr. Emma Scotter, PhD. Rutherford Discovery Fellow (and the team), Department of Pharmacology and Centre for Brain Research Faculty of Medical and Health Sciences University of Auckland

Current Research

Dr. Scotter heads the Motor Neuron Disease Lab at the Centre for Brain Research. Her team is focused on understanding the relationship between the deposition of protein aggregates and the death and dysfunction of various brain cells. In particular they are investigating cells of the blood-brain barrier in MND, which show impaired function that contributes to motor neuron damage. The team works with participants and with tissues:

  • Volunteers who are unaffected by neurological disease or are living with MND
  • Fixed or fresh human brain and spinal tissue
  • Brain cells grown from post mortem human brain and spinal cord tissue
  • DNA/ RNA/ proteins extracted from blood, cells, and tissues

Scotter Lab uses a range of methodology reflecting their diverse model systems:

  • Magnetic resonance imaging
  • Genomics: DNA sequencing, in situ hybridisation
  • Transcriptomics: Microarray, qRT-PCR
  • Proteomics: Immunohistochemistry, western blotting, immunocytochemistry

Relationship to MND

MND is Dr. Scotter’s primary research focus.

Future Research

Establishing a national MND genomics platform- potential collaborators are welcome to contact Dr. Scotter.

Collaborations

Dr. Scotter collaborates widely nationally and internationally on MND studies. Within the Centre for Brain Research she works with Professors Mike Dragunow and Richard Faull and Associate Professor Maurice Curtis. Dr. Scotter is on the Steering Committee for the NZ MND patient registry driven by Dr. Richard Roxburgh. She also collaborates on the genetics and cell biology of MND with Professor Christopher Shaw and Dr. Bradley Smith, King’s College London.

Resources

Scotter Lab works with banked human MND brain samples collected by the NZ Neurological Foundation Douglas Human Brain Bank. They also work with human MND brain cells grown by the Hugh Green BioBank.

Identified Gaps

Dr Scotter: “Personnel. Funding for postgraduate and postdoctoral researchers specifically in MND research is required to build capacity in MND research in NZ. Connections between NZ researchers with any MND research interest are also essential if we are to characterise MND here at home”.

The Team

Professor Mike Dragunow, Associate Investigator
Molecular mechanisms of human brain neurodegeneration

Dr. Deidre MacVeigh, Postdoctoral fellow
Drug discovery and mechanisms of blood-brain-barrier dysfunction

Andrew Siemens, Technician
Research support and characterisation of C9ORF72-positive human brain cells

Sarah Waters, Honours student
Mapping blood-brain-barrier leakage in motor neuron disease

Jayne McLean, Manager of the New Zealand Motor Neuron Disease Research Network

Contact Details

85 Park Road,
Grafton
Private Bag 92019
Auckland New Zealand
p: +64 9 3737599 (ext. 81350) +64 9 923 1350 (Direct dial)

Centre for Public Health Research

Grace Chen

Researchers

Grace Chen, Research Officer, PhD Candidate, Centre for Public Health Research, College of Health, Massey University.

Dr Dave McLean, Principal Investigator and Grace Chen’s supervisor

Professor Jeroen Douwes, Head of Department and Grace Chen’s supervisor

Professors Neil Pearce and Leonard van den Berg – overseas collaborators

Current Research

Grace and the team are conducting a New Zealand population based control study to investigate associations between occupational and environmental exposures and MND.

Relationship to MND

The aim of the study is to determine the relationship between MND and a range of unknown or suspected occupational and environmental exposures in New Zealand.

Future Research

The intention is to do more studies on MND after this study result has been published.

Collaborations

The Motor Neuron Disease Association New Zealand supports the recruitment for MND patients. The study also collaborated with the Centre for Brain Research (Scotter Lab) for the selected markers of the disease process.

Resources

Currently not using any shared resources, will share the database of the bio-markers of the disease process in New Zealand.

Resource Gaps

A formal diagnosis letter on the type of MND will help us to have a complete picture of the disease in New Zealand.

Contact Details

Centre for Public Health Research
Massey University
Wellington Campus
PO Box 756
Wellington 6140

e: g.chen1@massey.ac.nz
w: www.publichealth.massey.ac.nz
p: +64 4 801 5799 (63121) or +64  4 9793121