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Carrier Register
Patient Information
Cancer Genetics
What is the Carrier Register?
The Carrier Register is a record of NHS Cancer Genetic Unit
patients at The Royal Marsden who have a mutation in a
gene that could increase their risk of cancer, or are at risk
of inheriting a familial mutation and are in the process of
deciding if they would like testing.
How is information on the Carrier Register stored?
The Carrier Register is part of a database (called Trakgene),
used in the Cancer Genetics Unit which contains information
about Cancer Genetics patients at The Royal Marsden. The
database can produce a list of all our patients who have
mutations - this list is our Carrier Register. Information
stored within Trakgene is kept confidentially and is separate
from the main electronic medical records database, only the
Cancer Genetics Unit can access it.
What is the purpose of the Carrier Register?
The Carrier Register allows the Cancer Genetics Unit
to identify all carriers seen in our department and was
established to help us manage the long term follow up of
mutation carriers.
If you carry a mutation there will be different issues arising
for you at different stages of your life. From year to year your
risk management plan may not change significantly, so there
is no need for you to be seen every year by the genetics
clinic. By establishing the Carrier Register we have a system
to recall and contact patients at key points to ensure their
management plan is up to date.
What does being on the Carrier Register mean for
my follow up?
Initially the doctor or genetic counsellor who arranged
your genetic testing will set a review date dependant on
your personal circumstances. Once you have had all the
appointments you need following on from your genetic
diagnosis the file will be marked for review on the Carrier
Register at specific intervals; depending on your age, gender
and genetic diagnosis
We will review your notes at these stages and may send you a
clinic appointment, refer you for cancer surveillance or write to
ask you if you would like a clinic appointment.
What if I need advice about my genetic diagnosis?
If you are on the Carrier Register you can call the department
at any time to request a follow up appointment in our carrier
clinic. You can also ask to speak to the on-call genetic
counsellor if you have a simple query that can be dealt with
on the telephone. You do not have to wait for a letter from the
Cancer Genetics Unit to request an appointment.
What are the other benefits to being on the Carrier
Register?
We will contact you by letter with any new local or national
recommendations affecting management of mutation carriers,
if there are any research studies which may be of relevance to
you or your family and can let you know if we are running a
patient information day.
How can I remove my name from the register?
If you do not want your name on the Carrier Register we can
mark your file accordingly. Please contact the department on
the telephone number below to request this. Patients who have
asked to be removed from the Register will also be discharged
from the Cancer Genetics Unit and will need to seek a re-
referral if they wish to be seen again in the future.
Where can I get more information?
The Cancer Genetics unit has a webpage on The Royal Marsden
website. You can download patient information from the
website. The webpage will be updated periodically with all our
departmental leaflets and details of any patient conferences.
Contact details:
Telephone: 020 8661 3375
Fax:
020 8770 1489
Email:
cancergenetics@rmh.nhs.uk
Website:
www.rmh.nhs.uk
Should you require information in an alternative format, please contact
The Royal Marsden Help Centre.
The Royal Marsden Macmillan Hotline:
020 8915 6899 (available 24 hours a day, 7 days a week)
References
This leaflet is evidence based wherever the appropriate evidence is
available, and represents an accumulation of expert opinion and professional
interpretation.
Details of the references used in writing this leaflet are available on request
from:
The Royal Marsden Help Centre
Freephone: 0800 783 7176
Email: patientcentre@rmh.nhs.uk
No conflicts of interest were declared in the production of this leaflet.
Revised and printed July 2018. Review date July 2021
© The Royal Marsden NHS Foundation Trust GE-1581-04
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