ARDOC: Australian Register of Disorders of Consciousness

Disorders of Consciousness include Coma, Vegetative State (VS), Minimally Conscious State (MCS). Whilst Locked-in Syndrome (LiS) is not a disorder of consciousness, it has been included in this register because it is frequently misdiagnosed as being minimally conscious or vegetative. Many of these severely impaired individuals are unable to communicate yet are fully aware of everything that is going on around them. It is important that those with LiS are accurately diagnosed and that their incidence is recorded, hence their inclusion in ARDoC.

Because there is no Australian register of people with disorders of consciousness (DoC) there is scant data on the incidence of DoC in Australia. There is no way of knowing how many people with these devastating conditions there are in Australia, what the aetiologies are, how accurate our diagnostic methods are, which assessment protocols are being applied and which of those are empirically proven to be accurate and helpful, what treatments people are receiving and which of those therapeutic regimes are offering the most beneficial outcomes. Currently, to find DoC people and their records, one needs to contact every hospital, neurologist, neuro-rehabilitation centre, care home or hospice.

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

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; LiSA,
https://www.facebook.com/groups/1243149376305687/ enabling families, carers and loved ones of DoC 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. Those with DoC require extensive hospital services for diagnosis, management and therapy, adaptive equipment, home modifications (if able to be in their home), respite care, and social and financial support. Support services are largely dependent on state or federal funding although some people may have private medical insurance. By getting better information on DoC, (ie where the affected people are, their age and sex, what specific conditions they have, frequency of DoC in Australia) we can argue more convincingly for better funding of clinics, therapists, diagnostic and research services to improve the care of these vulnerable, damaged individuals.

BENEFITS TO DOC PEOPLE

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

BENEFITS TO FAMILIES, LOVED ONES, CARERS AND FRIENDS

ARDoC also includes an online forum; LiSA,
https://www.facebook.com/groups/1243149376305687/ enabling families, carers and loved ones of DoC people to contact each other for help and support.

BENEFITS TO PHYSICIANS AND RESEARCHERS

The ARDoC database enables physicians, neurologists and researchers to access information stored in its database, which are the responses to the questions on the Registration Form.

Data, or contact details of the next of kin of DoC people, will only be available to researchers/physicians following a written request made to the Brain Foundation.

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

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

For further information about this ARDoC Register, please contact
shannan@brainfoundation.org.au

CARER REGISTRATION FORM OF YOURSELF AS CARER FOR A DOC PERSON

FURTHER INFORMATION

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