Current Research Projects

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Current and Ongoing Research Projects

Below are some important long term research projects. Long term research can provide important information about disease patterns, risk factors, outcomes of treatment or health interventions, and best practice.

If you are interested in participating in clinical trials and research, go to Participate in Research

Study of pregnant women currently taking lacosamide (Vimpat): currently recruiting

Epilepsy Action Australia is the primary funder of The Raoul Wallenberg Australian Pregnancy Register (APR) who is working in collaboration with UCB Pharma to study pregnant women currently taking the medication lacosamide.

The primary objective of the study is to understand how levels of lacosamide change during pregnancy. No treatment changes or interference with medical care during pregnancy are planned as part of the study protocol.

The study will involve collection of blood during pregnancy and after the birth, and additionally collect breast milk samples, if possible, to determine the level of lacosamide recovered in breast milk. All other study assessments are part of normal care during pregnancy.

We encourage any person that is currently on lacosamide and who is already pregnant or planning on becoming pregnant to speak with the APR and their Neurologist about this study.

For more information about the study, or to speak with the Australian Pregnancy Register:

Phone: 1800 069 722
Email: [email protected]
Website: www.apr.org.au

1. https://www.anzctr.org.au/ACTRN12622001121752.aspx
This study has been approved by the Melbourne Health Human Ethics Research Committee. Approval number 2015.211 – HREC/11/MH/282. ANZCTR registration number: ACTRN12622001121752

Australian Pregnancy Register: currently recruiting

The Australian Pregnancy Register (APR) is  an independent research project into the long-term effects and safety of anti-seizure medications on the mother and child during and after pregnancy.

This register is designed to bridge current knowledge gaps about epilepsy medication and has already identified some issues that has resulted in a change in prescribing practices and a reduced rate of birth defects.

Epilepsy Action is a major partner and supporter of the APR.

 

To be eligible to participate, you need to answer yes to two of the following three questions. Are you:

  • Planning a pregnancy, currently pregnant or have recently given birth?
  • Taking an antiseizure medication with or without a diagnosis of epilepsy?
  • Not taking antiseizure medication but have been diagnosed with epilepsy?

The aim is to have as many women as possible enrol to provide a broad base of information. This is an observational study consisting of one to four brief telephone interviews and does not require any change to your current medication regime or treatment.

If you would like to contribute to the collective knowledge of seizure medications and pregnancy please Register Here 


Making Everyday Memory Optimal

Feel like you need help with your memory?  You’re not alone. Many people with acquired brain injuries notice memory difficulties.

 

We are developing a computer-based training program aimed at helping people like you, and we could use your input. If you are an adult (over the age of 18) with an acquired brain injury and have concerns about your memory, you might be eligible to try out this new program for free.

What’s involved: attending one-hour, group-based teleconferencing (Zoom) sessions (one per week, for six weeks) with an expert clinician; viewing short educational videos (and trying out some quiz questions); practicing computer-based exercises; receiving feedback.  Throughout this process, we will be collecting information on how the program works and asking for your opinions.

If you’d like to get involved, contact us via email [email protected] and we will be in touch.


The SELECT study – Consumer Advisory Board: recruiting for their consumer advisory board

Is looking to establish a consumer advisory board to join the team working on a clinical trial investigating sodium selenate as a treatment for medication resistant epilepsy (the SELECT study). The ideal person will have personal experience with medication resistant epilepsy, either as person with epilepsy or as a carer or family member of a person with epilepsy.
This is a randomised controlled trial and the main purpose is to look at whether the trial drug, sodium selenate, when given at 15mg three times a day for 26 weeks stops or reduces seizures, and whether this drug is disease-modifying, meaning the change in seizure frequency continues in the weeks and months after the drug is stopped.
The main outcome will look at: changes in seizure frequency, drug side effects, impact on mood and impact on thinking over 52 weeks. Up to 124 patients with drug resistant epilepsy will be recruited into the study from sites in Melbourne, Adelaide, Sydney, Perth and Brisbane over 2½ years with recruitment anticipated to start in late 2023.
There are two roles of the consumer advisors, you may choose to be involved in one or both:
1. Protocol development: Determining the priority of the study outcomes, that is, changes in seizure frequency, side effects, mood and thinking changes; making suggestions on the study protocol with respect to feasibility and/or additional measures which could be incorporated. This involves a discussion panel with the Project Manager & other people with epilepsy. This will take approx. 60-90 minutes & will take place both in person (Melbourne) & via zoom about March 2023.
2. Study advisory board: Providing consumer perspectives on study documents (such as consent forms and other patient facing material) and the ongoing conduct of the trial. This will involve reviewing of study documents sent via email with a follow up discussion with the Project Manager (via phone/zoom). Meetings will occur twice per year to update the advisory board on the study progress. Members of the advisory board will be invited to the annual investigator meeting (in person/via zoom) to be held in about February/March each year. The advisory board will consist of approx. 5 consumers.
If you are interested please contact the Project Manager, Lucy Vivash [email protected], or complete the Expression of Interest here https://docs.google.com/…/1FAIpQLSdHdDpLDHL…/viewform…

 

Help design a seizure prediction device!

We are designing an EEG monitoring device for seizure prediction and would like your help to understand users’ needs and requirements!

 

If you have epilepsy or are a family member or a caregiver of someone with epilepsy, we are interested to hear your opinions.

As a participant, you will be asked to complete a short online survey and take part in an interview via Zoom. The study takes 40 minutes to complete. This study is conducted by a research team at the School of Computer Science.

To participate, please contact Adele Tong on [email protected]

Understanding Personalisation Needs of Wearable EEG Sensors through Online Semi-structured Interviews. Version 2.0 – 24/03/22

 

Macquarie University researchers are currently conducting a brief survey to understand the experience of symptom invalidation (i.e., the dismissal or rejection of health symptoms by doctors, family or friends) on Australian adults living with chronic physical health conditions. If you are interested in finding out more about this survey, click: https://redcap.mq.edu.au/surveys/?s=X8JWY4KMC7

 

 

 

 

 

 

 

 


Examining the efficacy of an online Cognitive Behaviour Therapy (CBT) – based self-management program for adults with neurological disorders

 

Macquarie University’s eCentreClinic is looking for adults with epilepsy to take part in a free online course to help Australians with neurological conditions learn to manage:

  • Stress, anxiety, frustration and worry.
  • Low mood, sadness, grief and depression.
  • Day-to-day mental or cognitive activities.
  • Day-to-day physical activities.

Click here to find out more about this Wellbeing Neuro Course and current research trial


Quality of life in children with a genetically caused epilepsy disorder: currently recruiting

Researchers at the Telethon Kids Institute would like to talk with parents of children with a genetically caused epilepsy disorder. We wish to find out what challenges or helps quality of life. Findings will help researchers better determine how the lives of these children and their families can be improved.

Participants will be interviewed and it will take approximately one hour over the phone or online.

Who can take part?

Any parent of a child aged 2-18 years with a genetically caused epilepsy disorder

Contact for more information

Associate Professor Jenny Downs [email protected] phone (08) 6319 1763

Approved by Curtin University Human Research Ethics Committee (HREC) HRE2020-0687

Clinical Trials for Better Outcomes

Two in three people with epilepsy gain seizure control but that still means that for one in three people, current medication won’t help fully control their seizures.

Further medical research is needed to find more effective treatments. Clinical trials include investigations in which people volunteer to test new treatments to better prevent and manage medical conditions.

People with epilepsy are in a position to help others by participating in clinical trials that can contribute to medical knowledge and result in better treatment outcomes.

Participating in a clinical trial is a commitment and you need to be fully informed about the objectives of the research, what is expected of you and any risks and potential inconveniences that may be experienced during and after the trial.

Finding a Clinical Trial

Clinical trials contribute to medical knowledge and the results of these studies can make a difference in the care of future people by providing information about the benefits and risks of medications, products or procedures.


Other Research in Australia

The following hospital and university-based groups conduct epilepsy-related medical research in Australia:

Epilepsy and Neuropharmacology Research Group. Royal Melbourne Hospital, The University of Melbourne:

Covers both basic and clinical studies relevant to epilepsy and related areas, including traumatic brain injury.

The Florey Institute of Neuroscience and Mental Health:

One of the world’s top 10 brain research centres made up of four medical research institutes uniting to find cures for brain disease, including Howard Florey Institute, the Mental Health Research Institute, the National Stroke Research Institute and the Brain Research Institute.

Epilepsy Research Centre. Austin Hospital, Melbourne:

Comprises clinical researchers and scientists from research teams at the University of Melbourne, Austin Health and the Brain Research Institute working together to better understand the causes, treatment and outcome of epilepsy.

Neuroscience and Neurology Research Group. Monash University:

Features an Epilepsy Research Group focused on a range of issues.

Centre for Neuroscience,  Flinders University, South Australia:

Has a Brain Signals Laboratory is a high-level neurophysiological research unit with a special focus on epilepsy.