Steven Collins is a neurologist-scientist who is Director of the Australian National Creutzfeldt-Jakob Disease Registry (ANCJDR), as well as Professor/Senior Principal Research Fellow in the Department of Medicine, the University of Melbourne and Clinical Lead, Dementia Mission and Member, Clinical Governance Committee, The Florey. He was a National Health & Medical Research Council Practitioner Fellow 2006-2020. Professor Collins is also appointed to the Department of Clinical Neurosciences and Neurological Research, St Vincent’s Hospital, Melbourne, where he heads the Mitochondrial & Autoimmune Neurological Disorders diagnostic laboratory, a NATA accredited, national referral service.

The ANCJDR is the national referral service for diagnostic testing of prion diseases and in 2014 this and Alzheimer Disease CSF biomarker testing were subsumed under the NATA accredited National Dementia Diagnostics Laboratory, of which Professor Collins is Director. Through the ANCJDR Professor Collins undertakes both epidemiological and basic scientific research into prion diseases involving supervision of post-doctoral fellows and PhD students.

In 2008 Professor Collins became a member of the Friends and Advisory group of the CJD International Support Alliance and in 2009 he took on the role as Medical Director of the CJD Support Group Network assisting the network to support CJD families in Australia.

In addition, Professor Collins undertakes translational research into Alzheimer’s disease, as well as participates as principal investigator in Alzheimer’s disease clinical trials. In 2023, Professor Collins was awarded an AO in the Australia Day King’s Honours for his contributions to the field of prion diseases.

Dr Carolyn Orr is a consultant neurologist based in Perth, Australia. Originally from Scotland, she trained in medicine at the University of Glasgow, holds a PhD in Parkinson’s disease from the University of New South Wales, did her neurology residency in Sydney and clinical fellowships in the Mayo Clinic in Minnesota. She specialises in neurodegenerative brain disease and young onset dementia. She is a public speaker on the connections between human and environmental health.

Genevieve completed her Honours in Pathology before expanding her areas of interest and qualification into Epidemiology & Biostatistics. As a Research Assistant, Genevieve focused initially on the pathology of Alzheimer’s Disease before becoming a long-standing member of the Australian National CJD Registry (ANCJDR) from 2002 until 2017 when she relocated with her family to Perth, WA.

During her time at the ANCJDR, Genevieve gained extensive experience in managing the surveillance database and records as well as conducting human ethics compliant research, analysis and publication, developed skills in gathering both quantitative and qualitative data from literature and stakeholder surveys, gained substantial experience in writing Registry protocols, reports, manuscripts and has published widely in peer-reviewed journals. During this time, Genevieve effectively combined her pathology grounding with a strong understanding of biostatistics and epidemiology to drive reporting of CJD in Australia to state, national and international oversight bodies. Genevieve also assisted with team training, management and provision of the national CJD testing platform including biospecimen management, data collection, testing and reporting, bringing a systematic, considered and evidence-based approach to all her projects while naturally promoting effective communication and collaboration amongst her team members and stakeholders.

Since late 2024 on returning to Melbourne, Genevieve has taken on a new role at the Florey Institute of Neuroscience and Mental Health as the coordinator of the Study of the PrionAtRisk Cohort (SPARC), which is supported by the CJD Support Group Network. Initial work in this role includes the development of the study program and preparation of the ethics approval application for submission to The Royal Melbourne Hospital.

Christiane is the coordinator of the Australian National CJD Registry, responsible for the day to day operations of the group and its interactions with clinicians and patient families.

Lisa is a Senior Policy Officer within the Infection Prevention and Policy Surveillance Unit, part of the Communicable Disease Control Directorate at the Department of Health in Western Australia. She has over 20 years expertise as registered nurse and midwife, during this time held a position as an Infection Prevention and Management Clinical Nurse Consultant at a tertiary maternity hospital. Lisa has significantly contributed to public health responses, including COVID-19, viral haemorrhagic fever and Mpox, Lisa's expertise encompasses developing, implementing, and evaluating IPC policies and collaborating with stakeholders to drive infection prevention initiatives.

Dr Gargi Pathak is a Clinical Geneticist at Genetic Health Western Australia (GHWA). She specializes in the areas of pediatric, adolescent and adult-onset conditions. Her clinical and research interests are in the diagnosis and management of inherited cancer disorders, particularly pediatric cancers. She has many years of experience working at GHWA and has been involved in diagnostic testing for Creutzfeldt-Jakob disease (CJD).

Dr Rebecca Gooding is a Senior Medical Scientist at the Neurogenetics Unit in the Department of Diagnostic Genomics at PathWest Laboratory Medicine of WA, a reference centre providing genetic testing for neurological and neuromuscular disorders for Australia and New Zealand.
Prior to this role, she worked as a research assistant at the West Australian Institute of Medical Research and was awarded a PhD in 2008. Since 2005, she has been working as a Medical Scientist at the Neurogenetics Unit. Over this time, she has been involved in all aspects of prion disease genetic testing from DNA extraction to PRNP gene sequence analysis and reporting as well as closely liaising with the ANCJDR and the CJD Support network to facilitate the testing and result delivery for the patients and families impacted by prion disease.

A Clinical Program Officer with the Infection Prevention Policy Surveillance Unit at the Communicable Disease Control Directorate, Department of Health, Western Australia, she brings 16 years of nursing experience to her role. A Registered Nurse by training, she plays a key role in conducting public health investigations related to Creutzfeldt-Jakob Disease (CJD) in Western Australia and collaborates with the Australian National CJD Registry (ANCJDR) to support data collection efforts. She continues to maintain her clinical practice as an Intensive Care Unit nurse at Fiona Stanley Hospital, ensuring her work remains grounded in frontline healthcare delivery.