CONTACTS FOR FURTHER INFORMATION
State Coordinators
QLD & WA
AUSTRALIAN
RHEUMATOLOGY
ASSOCIATION
Lyn March
02 9926 7351
lynmar@med.usyd.edu.au
Lyndall Henderson
02 9926 8579
lyndallh@med.usyd.edu.au
NSW & ACT
Marissa Lassere
02 9350 2139
Marissa.Lassere@sesiahs.health.nsw.gov.au
Rosemarie van den Haak 02 9350 2982
Rosemarie.Vandenhaak@sesiahs.health.nsw
.gov.au
ARAD REGISTRY
VIC, SA, TAS & NT
Rachelle Buchbinder
03 9508 1652
Rachelle.buchbinder@med.monash.edu.au
Lainie Wengier
03 9508 1652
lwengier@cabrini.com.au
COMMONLY
ASKED
QUESTIONS
ABOUT THE
REGISTRY
Currently funded by:
NHMRC Enabling Grant
With additional funding through Educational
Grant to the ARA from:
Abbott Australasia
Amgen
Schering-Plough Pty Ltd
Wyeth
Q. What is the purpose of ARAD?
A. To develop a national database of
patients commencing on the biological
therapies as well as a group of arthritis
patients not taking biologicals
Q What will ARAD provide?
A. Longitudinal clinical data about the
management of arthritis patients. This will
be important to ensure that best practice
is maintained.
Q. What types of patients should be
considered for ARAD?
A. All patients with rheumatoid arthritis,
juvenile arthritis, ankylosing spondylitis
and psoriatic arthritis, which are
commencing on therapy with a biological.
The non-biological group will be collected
later.
Q What biological therapies are
currently available?
A. There are 4 at this time
 Etanercept – Enbrel – Wyeth
 Infliximab - Remicade – Schering
Plough
 Adalimumab – Humira – Abbott
 Anakinra - Kineret – Amgen
Q. What will the database provide to
the rheumatologist?
A. The rheumatologist can receive a
range of reports including information
about the patients that he/she has
entered into the registry, through to a
summary of de-identified data collected
from all patients in the database.
Q. How will this data be presented?
A. It will be available in report format and
as raw data in Excel.
Q. What is being asked of the
rheumatologist?
A. While preparing your documentation
for submission to the HIC for reimbursed
supply of a biologic, the following actions
are requested:
 Provide information about ARAD to
the patient
 If they are interested in participating
ask them to fill out their section of the
‘Permission to contact’ form
 Fill out the top section on the
‘Permission to contact’ form
 Fax the ‘Permission to contact’ form
to the ARAD Data Management
Centre on 1800 022 730
Q. What is the patient being asked to
do?
A. The patient is asked by the
rheumatologist
to
complete
the
‘Permission to contact’ form. After the
‘Permission to contact’ form has been
received by ARAD, the state coordinator
will contact them and explain further the
purpose of the registry. The patient will
then be sent a Patient Information and
Consent Form and the Baseline
questionnaire. Subsequently every 6
months they will be send a follow up
questionnaire.
Q. What data is being collected from
these questionnaires?
A. There are a number of sections
including:
 General administrative information.
 Demographic information
 Arthritis history
 Cancer history
 Other illnesses experienced
 Treatments history including adverse
reactions
 Health status measures such as
HAQ, SF-36, EUROQOL and AQOL
Q. Why is it important to collect data
before the patient starts on biologic
management?
A. This data provides a comparison of the
changes of the health outcomes of the
patient when treated with biologics
compared to before they were introduced.
This applies to the efficacy, safety and
quality of life outcomes.
Q. What about patients that have
already started on biologics?
A. It is important to collect data from
whatever point in the therapy so that long
term outcome data can be collected.
Q What happens when a patient
changes from one biologic to another?
A. This data needs to be captured and
the reasons for the change provided.
Continued collection of the patient data is
then requested.
Q. What happens if they stop taking
biologic medications?
A. It is still important that the ARAD
registry continue to collect that patient’s
longer-term health outcome data. The
continued follow up data will provide
important information. ARAD will continue
to follow up patients for as long as they
agree.
Q. What if the patient does not qualify
for biologic therapy when submitted to
the HIC?
A. These patients are still eligible to be
included in the ARAD registry. They will
form part of the control group.
Q. Who will have access to the patient
contact details?
A. The paperwork that you provide will be
sent to the ARAD state co-ordinators.
Only the state co-ordinators have contact
with the patient.
Q. What security is in place to protect
the data collected from patient
questionnaires?
A. All patients are allocated with a unique
project number.
All data containing
patient names, contact details and clinical
information are kept in a password
protected database and accessible only
by the ARAD co-ordinator and chief
investigator.
Q. What if I need to ask more
questions?
A. Please feel free to contact your state
ARAD co-ordinator as listed on the back
of this document.
Q. Do you have any information that I
can give to my patient’s when
discussing this project?
A. Yes, there is a patient information
brochure. This is available on the ARA
website or from your ARAD state coordinator.
Q. What role do the pharmaceutical
companies have with respect to this
registry?
A. Four companies have provided untied
educational grants for this project. While
advice is being sought from the
companies that have provided this
support, there is no obligation on behalf
of the ARA to follow any suggestion
made. Similarly no data will be provided
to the companies that will in any way
compromise the confidentiality of the
providers of the data to the registry. No
identifiable individual patient or doctor
data will be released.