Global Angelman Syndrome Registry Team
Associate Professor Honey Heussler – Principal Investigator
Honey is the Medical Director of the Child Development Program at the Children’s Health Queensland Hospital and Health Service in Brisbane. Honey is a Developmental and Behavioural Paediatrician with a dual qualification in Sleep Medicine.
Honey’s clinical work involves children with a variety of Developmental and Behavioural problems as well as a number of clinics that specialise in Sleep disorders for this population. She also runs a specialised clinic for some genetic disorders including Angelman syndrome.
Honey is a member of the Scientific Advisory Board for the Foundation for Angelman Syndrome Therapeutics and has been heavily involved in the Angelman Syndrome community for over a decade.
Professor Matthew Bellgard – Development Team Lead
Professor Bellgard is the inaugural eResearch Director at Queensland University of Technology, leading the eResearch Office to work closely with researchers and external end users to understand the research question, the breadth of technical and socio-technical challenges in order to devise innovative strategies to ultimately ensure technological solutions are fit-for-purpose and best-of-breed.
With a PhD in Computer Science from the University of Western Australia (1994) specialising in Artificial Intelligence, Professor Bellgard has led the design and development of digital health solutions for government, industry and academia, and higher education.
Board member of the APEC Life Science Innovation Forum Executive Board, Chair of the APEC LSIF Rare Disease Network. Professor Bellgard is also a Board member of QCIF Ltd.
Megan Tones – Data Curator
Megan Tones has 15 years’ experience as a researcher, with a focus on research methodology and quantitative analysis. Her research interests include lifespan developmental psychology, disability inclusive education, neurodevelopmental conditions, and registries. Her PhD project involved the construction of a survey to measure engagement and disengagement in learning and development goals within an organisational setting.
Megan has served as the data curator on the Global Angelman Syndrome Registry since 2015 overseeing development of the infrastructure, data migration and ongoing enquires from multiple stakeholders.
Yvette Wyborn – Project Business Analyst
Yvette is the Project Business Analyst at the Division of Research and Innovation at Queensland University of Technology. Yvette is an experienced solution specialist working across telecommunication and education industries, with a focus on Human Centred Design. Yvette serves as the engagement lead between FAST and QUT in delivering and supporting the Angelman Registry.
Chris Williams – eResearch Analytics Specialist
Ryan Bennett – Software Development Team Leader
Ryan is a Software Development Team Lead at the Division of Research and Innovation at QUT. Ryan is a senior software engineer with experience in the corporate and educational sectors and is a strong advocate for the transformation of traditional software into the cloud and serverless spaces.
Adam Smith – Software Development Team
Adam Smith is a Software Developer at eResearch QUT. Adam is an experienced developer of real-world data gathering, visualisation, and analysis tools.
Meagan Cross – Vision and project management
Meagan is one of the founders of the Foundation for Angelman Syndrome Therapeutics Australia and serves on the United States board for the Foundation for Angelman Syndrome Therapeutics. Meagan Cross has a background in information science and operates a geographic information science consultancy with experience in data development, management, programming, analysis and presentation.
Meagan brings her experience in data collection and as a parent to a child with Angelman syndrome to this project.
Chloe Simons – Project Vision and Promotion
Chloe is the science officer for the Foundation for Angelman Syndrome Therapeutics Australia and was heavily involved in the design and implementation of the project as well as ongoing updates and advice on clarity for parents and users.
Shane Jez – Project management
Shane serves on the board for the Foundation for Angelman Syndrome Therapeutics Australia and is active in promotion and logistics for the Global Angelman Syndrome registry.