Download The Inherited Cancer Connect Mutation Carrier Database

Do I need to give consent to have
my information in the ICCon
database?
We are not requesting specific consent from individuals to be included in the ICCon database.
Consent is generally required in circumstances
when for instance there is more than minimal risk
of harm from participation, or information obtained
can identify the person, but not for use of data that
cannot identify individuals. Data in the ICCon database will be coded and will not be identified within
the database.
Due to the rarity of many hereditary gene faults
close to 100% coverage of these conditions is
needed for the database to function effectively as
a genuine research resource.
Any use of data stored in the ICCon database
needs specific approval by a Human Research Ethics Committee and the ICCon Oversight and Governance Committee.
If you should wish to have your coded data removed from the ICCon database, please contact
your Familial Cancer Clinic
Participating Familial Cancer Clinics
New South Wales
Hunter Genetics
Prince of Wales Hospital
Royal Prince Alfred Hospital
St Vincent’s Hospital
Westmead Hospital
Royal North Shore Hospital
Liverpool Hospital
(02) 4985 3132
(02) 9382 2551
(02) 9515 8780
(02) 8283 3395
(02) 9845 6947
(02) 9463 1554
(02) 8738 9746
Queensland
Genetic Health QLD
(07) 3636 1686
South Australia
SA Clinical Genetics Service
(08) 8161 6995
Tasmania
Tasmanian Clinical Genetics Service (03) 6222 8296
Victoria
Austin Repatriation Hospital
Monash Medical Centre
Peter MacCallum Cancer Centre
The Royal Melbourne Hospital
(03) 9496 3027
(03) 9594 2026
(03) 8559 5322
(03) 9342 7151
Western Australia
Genetic Services of WA
(08) 9340 1603
Who funds the ICCon database?
The ICCon Partnership is funded from 2013 to
2018 by the Cancer Council NSW through the
strategic Research Partnership (STREP) Grants
Funding program. Additional funding has been
provided by the Office of Population Health Genomics (WA Dept of Health).
The ICCon Database
Contact
Chief Investigator A/Prof Paul James
Peter MacCallum Cancer Centre
Locked Bag 1, A’Beckett St
Central ICCon Coordinator
(Kate Richardson/Lyon Mascarenhas)
Phone: (03) 8559 6185/ (03) 8559 6189
Fax:
(03) 8559 5329
E-mail: [email protected]
[email protected]
Web: www.iccon.org.au
The Inherited
Cancer Connect
Mutation Carrier
Database
Introduction
The ICCon partnership is a collaboration
connecting all Australian Familial Cancer
Centres (FCCs), seeking to improve the
outcomes of people with rare inherited
cancers. One role of this partnership is to
establish a national database of individuals found to have gene faults or mutations
causing an increased risk of cancer.
What is the ICCon Database?
The ICCon database is a collection of information, or “data” on all individuals with a
fault in one of their genes causing an increased risk of cancer. This data has already been collected by the FCC or genetics clinic that did the genetic test. The FCC
forwards the data to the ICCon database
so no contact is required between the ICCon database and the individuals included
in the database.
Examples of information to be stored in the
database include: gene mutation type, year
of birth, cancer diagnosis (if applicable). A
complete list can be obtained by contacting the Central ICCon Coordinator (see
back of booklet).
Why set up the ICCon Database?
A national familial cancer database does
not exist in Australia. Databases such as
this enable researchers to look into the
causes of diseases and how best to treat
and/or prevent them.
What will the database be used for?
Who can access my information?
 Allow more detailed, longer term studies of the
Records in the database will be coded but “reidentifiable”. Re-identifiable data is where identifiers
(e.g. patient name, address) in the records have
been taken out and replaced by a unique study code
in the database. The code key will only be known to
the FCC responsible for the individual. It will be possible to reconnect the code and the identifiers, meaning it is possible to re-identify a specific individual,
but this can only be done by the FCC responsible for
the individual.
genetics behind cancer
 Gain a complete understanding of the number
of people in Australia
affected by gene faults
causing cancer to help
plan for their future medical and support needs
 Enhance research into targeted cancer thera-
pies (industry sponsored and/or publicly funded) through being able to assess study feasibility quickly and cheaply
 Identify areas requiring more attention (e.g.
annual follow up of gene fault carriers), or education (e.g. uptake of risk reducing medication)
 Other clinical or research uses
How will the records be stored?
Data will be stored on a secure server (computer
database) at the Peter MacCallum Cancer Centre
in Melbourne. Storage and exchange of data will
be subject to the State and Federal legislation
governing the collection, storage and use of data
including personal health information.
The ICCon database will be maintained by the ICCon Data Manager (based at Peter MacCallum
Cancer Centre), who is the only person who will
have access to data contributed by all participating FCCs. The ICCon Data Manager will not have
access to any information that will identify individuals.
Coordinators are in place within each State who are
responsible for setting up the transfer of data from
the FCC to the ICCon database and will need to be
able to view both the identified information in the
clinic’s database and re-identifiable information in
the ICCon database for FCC(s) within their State only.
Researchers may approach ICCon for use of the database for specific research projects. Every project
will need approval from an Ethics Committee as well
as the ICCon Governance Committee. ICCon will only
be able to provide de-identified data from the ICCon
database directly to the project researchers
Some projects could require identifiable information
and/or contact with participants; In these cases ICCon will put the researchers in touch directly with the
FCC(s) that have eligible participants. ICCon will provide the FCC with the ICCon study code number for
eligible participants and the FCC can identify those
participants through the code key they hold. The
FCCs will then make contact with the eligible participants to inform them about the project in a manner
approved by the Ethics Committee responsible for
the specific project.
ICCon DB Pamphlet v1.2 13 Jan 2015