ARA
Database
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
Amgen Australia Pty Ltd
Roche Products Pty Ltd
Wyeth Australia Pty Ltd
Previous educational grants were provided to the ARA by:
Aventis
Schering Plough
DATABASE UPDATE : August 2008
As of 1st August 2008, a total of 2458 patients were enrolled in ARAD across Australia from 190 participating rheumatologists. The table below summarises the enrolment characteristics of the ARAD cohort at 01/08/08.
|
Diagnosis |
Current bDMARD |
RA |
AS |
PsA |
JCA |
AOSD |
| Abatacept |
6 |
0 |
0 |
0 |
0 |
Rituximab |
58 |
0 |
0 |
0 |
0 |
Adalimumab |
652 |
100 |
93 |
3 |
0 |
Anakinra |
4 |
0 |
0 |
5 |
1 |
Etanacept |
901 |
180 |
87 |
58 |
0 |
Infliximab |
99 |
158 |
24 |
3 |
0 |
Not receiving therapy |
242 |
15 |
19 |
10 |
0 |
Control |
250 |
9 |
28 |
28 |
0 |
Total |
2212 |
462 |
251 |
107 |
1 |
1. Direct patient recruitment is continuing. Patients wanting more information are being guided to the 'Patients: Expression of Interest' form on the ARAD website (see above) and/or to the State Co-ordinators. This DOES NOT replace rheumatologists referring patients to ARAD.
2. Please note that the 'Access Policy' and 'Expression of Interest Form' for external researchers to access de-identified ARAD data are available to download from this site (see above).
3. The most recent ARAD 6-monthly report for rheumatologist is available at: 6 month report
Rheumatologists are urged to 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.
Once again, we would like to thank all participating rheumatologists for their continuing support of ARAD.
|
ARAD PROJECT TEAM
Investigators
Professor Rachelle Buchbinder
Associate Professor Lyn March
Associate Professor Marissa Lassere
Associate Professor Christopher Reid
Project Manager
Dr John Oldroyd
e: john.oldroyd@med.monash.edu.au
Tel: 03 9508 1137
Fax: 03 9508 1653
State coordinators
QLD, WA, NT & TAS
Lyndall Henderson
e:
lyndallh@med.usyd.edu.au
Tel: 02 9926 8579
Fax: 02 9906 1859
NSW & ACT
Rosemarie Vandenhaak
e: Rosemarie.vandenhaak@sesiahs.health.nsw.gov.au
Tel: 02 9113 2982
Fax: 02 9588 1156
VIC & SA
Bridie Murphy
e:
bridie.murphy@med.monash.edu.au
Tel: 03 9508 1652
Fax: 03 9508 1653
Data Centre Staff
Molly Bond
Nino Hay
Fax: 1800 022 730
http://www.ccretherapeutics.org.au/
(Member Access Only)
Participating Members Information
Includes:
- Participating Members List
- Adverse Event Reporting for ARAD patients taking bDMARDs
- Spreadsheet to track patients taking bDMARDs |
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.
Adverse Event Reporting for ARAD patients
If a patient participating in ARAD develops an adverse event you may notify us by completing the form at the link above and faxing it to us (toll free 1800 022 730). In particular, these may be adverse events that are definitely or possibly related to bDMARD. We are however interested in adverse events in all ARAD patients.
We will then 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).
The benefits of participating and supporting ARAD
- ARAD provides a
valuable resource for clinicians and researchers of this chronic disease
and provides a quality assurance activity for rheumatologists
- ARAD can monitor patient outcomes and any adverse events that may be experienced
- Monitor adverse events
- Regular reports are provided to participating rheumatologists with the progress of their own patients as well as comparing their patients to the ARAD population. 6 monthly report - May 2008
- Regular
newsletters are provided to participants updating them on ARAD and providing them with information on arthritis
- With the enrolment of a control group in the future, comparisons
can be made between patients on biological therapies and those not on biologicals
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 from the ARAD website (see above).
Then, fax the Participants: "Expression of Interest" form (toll free) to: 1800 022 730.
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 written postal questionnaire survey every 6 months. 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 de-identified and stored in a password protected database,
accessible only by ARAD staff.
Rheumatologists - what do you need to do?
When 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.
Then fax the 'Permission to Contact' form to ARAD Data Management Centre on toll free:
1800 022 730
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
PARTICIPANT NEWSLETTER ARCHIVE
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).
Updated 15 July 2008