ARA Database
- Participants: 'Expression of Interest' form
- Rheumatologists: 'Permission to Contact' form
- Adverse Event Reporting for ARAD patients taking bDMARDs (please complete and fax toll free to: 1800 022 730)
- Latest Participant Newsletter
- ARAD access for external researchers: Access Policy and Expression of Interest form
- Participant Brochure
- Publications
- Reply Paid Labels
- General Information on ARAD Population (January 2010)
Australian Rheumatology Association Database
A R A D
Currently funded by: NHMRC Enabling Grant
Supported by:
Monash University
Cabrini Health
with additional funding through Educational Grants to the ARA from:
Abbott Australasia Pty Ltd
Roche Products Pty Ltd
Wyeth Australia Pty Ltd
Schering Plough
Previous educational grants were provided to the ARA by:
Amgen Australia Pty Ltd
Aventis
DATABASE UPDATE: July 2010 At 1st July 2010, 3081 participants are completing questionnaires and Table 1 below summarises the characteristics of the ARAD cohort who have ever answered a questionnaire as at 1/07/10. Most participants who decide to no longer answer questionnaires have agreed to allow ARAD access to their medication records through Medicare Australia. A further 1042 have agreed to this tracking. Table 1: ARAD Participants at the last questionnaire/tracking date*
* Some patients have no data as yet. For more charts on the population of ARAD please click here (ARAD Population January 2010) Patient recruitment is continuing. Patients wanting more information are being guided to go to the “Patients what do you need to do?” section below and/or contact a State Co-ordinators. This DOES NOT replace rheumatologists referring patients to ARAD. Rheumatologists are urged to continue enrolling ALL patients, see the “Rheumatologists – what do I need to do?” section below. We would like to thank all participants and participating rheumatologists for their continuing support of ARAD. |
Project Manager |
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What
is ARAD?
- It
is a national Australian database which collects important health information from individuals with inflammatory arthritis including:
- Rheumatoid arthritis
- Ankylosing spondylitis
- Juvenile arthritis
- Psoriatic arthritis
- The aim of ARAD is to determine the short and long term effectiveness and safety of new biological drugs, such as Enbrel, Remicade, Humira, Kineret, MabThera and Orencia, used to treat inflammatory arthritis conditions.
- ARAD collects information from patients every 6 months via questionnaires. Questions about medical history, medication history, responses to medication, physical functioning and quality of life are asked.
- Patients and rheumatologists across Australia contribute to ARAD.
Further details are in the Participant Brochure
The benefits of participating and supporting ARAD
- ARAD provides a valuable resource for all patients with this chronic disease and their clinicians by monitoring individual patient outcomes and adverse events.
- Regular 6 monthly reports are provided to participating rheumatologists with the progress of their own patients as well as comparing their patients to the ARAD population. See the latest ARAD 6-monthly report
- Information on the ARAD population is provided to participants, clinicians, researchers and policy makers. This is combined information only and contains nothing that would allow an individual to be identified.
- Regular newsletters are provided to participants updating them with information about ARAD. Click for the latest (January 2010) newsletter and here (Participant Newsletter Archive) for past newsletters.
Patients - what do you need to do?
To enrol, you can ask your Rheumatologist to fill in a 'Permission to Contact' form. Alternatively, if you would like to register your interest directly, a Participants: "Expression of Interest" form can be downloaded here (see above).
Then, fax the Participants: "Expression of Interest" form (toll free) to: 1800 022 730 or use the reply paid labels.
Your ARAD State Co-ordinator will then:
1. Send you an ARAD pack containing a patient information and consent form, questionnaire and a reply paid envelope
2. Contact you to explain the project and what your involvement would be.
Participation involves completing a questionnaire every 6 months. This can be done online or by a paper questionnaire posted to you. Each questionnaire should take about 30 minutes to complete.
ARAD collects information about your arthritis and health, the medications you take, your quality of life and information from state and federal health registries.
There are NO blood or physical tests in ARAD.
We encourage you to discuss your participation with your Rheumatologist.
All
patient information is stored in a password protected database, accessible only by ARAD staff.
The most recent ARAD 6 monthly aggregate report for rheumatologists is available at: 6-monthly report.
A list of published papers can be found here Publications.
Rheumatologists - what do you need to do?
When seeing a patient in clinic and/or preparing the application form for the biologic medication:
- Introduce ARAD Participant Brochure and ask patient to sign the 'Permission to Contact' form.
- Advise patient that ARAD will contact them to discuss the registry in further detail.
- Complete the Rheumatologist box on the 'Permission to Contact' form and ask the patient to complete and sign the relevant section.
Rheumatologists are urged to fax the 'Permission to Contact' form to ARAD Data Management Centre as soon as possible toll free on:
1800 022 730
So that pre-biologic baseline health status and quality of life can be measured to evaluate change in as many patients as possible. This will be very useful data in the event of any future government reviews of biologics in Australia.
Please continue enrolling CONTROL patients (i.e. patients with inflammatory arthritis who have not received biological therapy).
To enrol a CONTROL patient, simply complete the 'Rheumatologists: Permission to Contact form' in the same manner as non-control patients.
The
ARAD project team then:
- Maintains regular contact with the patient and collects data from them at 6 monthly intervals
- Provides feedback to the rheumatologist on their patient's progress
Adverse Event Reporting for ARAD patients
If a patient participating in ARAD develops an adverse event you may notify us by completing the form here and faxing it to us (toll free 1800 022 730). We are interested in any adverse events in all ARAD patients, (not just those that are possibly related to bDMARDs).
We will send a copy of the form to the Australian Drug Reaction Advisory Committee (ADRAC) unless you advise us not to. This means that you do not need to complete a blue ADRAC form for these patients.
The adverse event information that you provide will be stored securely by the ARAD Data Management Centre and will be completely confidential.
ARAD access for external researchers
- ARAD is funded in part by an NHMRC Enabling Grant This NHMRC scheme supports facilities where there is a national need for the facility and provides all Australian researchers with access to the facility. Guidelines about access to ARAD for Australian researchers are contained in the ARAD Access Policy document. Researchers interested in accessing ARAD should read the document carefully and submit an Expression of Interest form, along with other materials described in the documents. Other sources of financial support for ARAD come from the ARA, Monash University and pharmaceutical companies (through educational grants).
Latest Participant Newsletter
Participant Newsletter - January 2010
PARTICIPANT NEWSLETTER ARCHIVE
September 2009
July 2009
January 2009
July 2008
January 2008
July 2007
January 2007
July 2006
August 2005
Still have questions about the ARAD Registry?
Click on "Frequently asked questions about the Registry" (or contact your State Co-ordinator).
Page updated 7 July 2010
