ARDOC: Australian Register of Disorders of Consciousness

Disorders of Consciousness include Coma, Vegetative State (VS), Minimally Conscious State (MCS) and Locked-in Syndrome (LiS). Many of these damaged patients are unable to communicate yet are fully aware of everything that is going on around them. Because there is no Australian register of patients with disorders of consciousness (DoC) there is scant data on the incidence of DoC in Australia. There is no way of knowing how many patients with these devastating conditions there are in Australia, what the etiologies are, how accurate our diagnostic methods are, which assessment protocols are being applied and which of those are empirically proven to be accurate, what treatments patients are receiving and which of those therapeutic regimes is offering the most beneficial outcomes. Currently, to find DoC patients and their records, one needs to contact every hospital, neurologist, neuro-rehabilitation centre or hospice.

To rectify this situation an Australian register has been established, the Australian Register of Disorders of Consciousness (ARDoC).

New in 2023: We’re pleased to announce the launch of the Facebook Locked-in Syndrome Association Community Forum (LiSA). Read more about this.

WHAT IS ARDOC?

ARDoC is a Register for those with DoC, in which physicians, neurologists, clinicians, specialists, family, loved ones and friends can register. We will contact you occasionally to update and maintain details of the person suffering from a disorder of consciousness. ARDoC also includes an online forum, enabling families, carers and loved ones of these isolated people to contact each other for advice, help and support.

HOW ARDOC WORKS

Clinicians, physicians, nursing staff, therapists, family or friends apply to register a patient. ARDoC records that person’s application, generates a Unique Identifier and responds to the applicant’s email. Your initial contact to us will be acknowledged and you will then be asked to complete a simple form which you can either email or print and send back to us. We will also send you a more detailed form which you have the option to complete. Should you choose to complete it, this more detailed form allows us to compile records of aspects of DoC for research purposes. All information is held only in the Brain Foundation’s secure database – it is not held online. We will ensure that all information is securely stored, assuring confidentiality.

WHY ARDOC IS NEEDED

While DoC are not all that common, the impact of a person with a DoC upon their family, loved ones, friends, workplace and community can be enormous. Patients with DoC require extensive hospital services for diagnosis, management and therapy, adaptive equipment, home modifications (if able to be nursed in the home), respite care, and social and financial support. Support services are largely dependent on state or federal funding although some patients may have private medical insurance. By getting better information on DoC, (ie where the affected patients are, what specific conditions they have, frequency of DoC in Australia, whether they’re in the cities or the country, therapeutic regimes, prognostic and outcome data, who is looking after them etc), we can argue more convincingly for better funding of clinics, therapists, diagnostic and research services to improve the care of these vulnerable, damaged patients.

BENEFITS TO DOC PATIENTS

With the informed consent of family, loved one/legal surrogate, the patient can be included in DoC research. Such research may consist of analyzing diagnostic procedures, assessment protocols for evaluating level of consciousness, therapeutic regimes and many other important issues affecting the well-being, management and treatment of patients. It is hoped and expected that increased knowledge of patients with DoC will encourage better funding of clinics, therapists, diagnostic and research services thereby improving the care and outcome for DoC patients.

BENEFITS TO FAMILIES, LOVED ONES, CARERS AND FRIENDS

ARDoC also includes an online forum, enabling families, carers and loved ones of these isolated people to contact each other for advice, help and support.

BENEFITS TO PHYSICIANS AND RESEARCHERS

The ARDoC database enables physicians, neurologists and researchers, having obtained permission, to access medical, diagnostic and treatment information stored in its database. This data is expected to enhance clinical and technical research into DoC. There will be specific fields from which researchers can apply for information – for example, the ARDoC system will record whether neuroimaging (fMRI, MRI, PET, EEG and DTI) is available. A researcher wanting to access details specifically relating to say fMRI or DTI is therefore able to do so. All patient data is de-identified (ie patients are identified by a unique identifying code, not their name). Data will only be available to researchers/physicians following informed consent to a written request for specific information, made to the patient’s legal surrogate/representative and/or physician.

WHY IS IT IMPORTANT TO ENROL AS A DOC RESEARCH PARTICIPANT?

With the informed consent of family, loved one/legal surrogate, the patient can be included in DoC research. Such research may consist of analyzing diagnostic procedures, assessment protocols for evaluating level of consciousness, therapeutic regimes and many other important issues affecting the well-being, management and treatment of patients. It is hoped and expected that increased knowledge of patients with DoC will encourage better funding of clinics, therapists, diagnostic and research services thereby improving the care and outcome for DoC patients.

CARER REGISTRATION FORM OF YOURSELF AS CARER FOR A DOC PATIENT

FURTHER INFORMATION

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