here - IBD Registry

IBD Registry –
Information for Patients
The IBD Registry is a national project to collect information
about Inflammatory Bowel Disease (IBD) from across the UK
for the first time.
Collecting this information will:
be contacted.
● Help hospitals to improve their care of
● Improve our understanding of how
How is the confidentiality of my
personal information protected?
people’s lives are affected by IBD
Relevant information about you, your
● Help the NHS to design better IBD
medical record and your IBD care is sent
services
by your hospital to the Health and Social
● Support research into IBD
Care Information Centre (HSCIC). Before
people who have colitis or Crohn’s disease
the HSCIC sends that information to the
What does it mean for me as a
patient?
IBD Registry, they change your identifiable
Collecting information on a large number
format so that no one at the IBD Registry
of patients into a UK registry (database)
can identify any individual patient. (This
will help improve our understanding of the
process is called pseudonymisation.) The
disease and monitor the quality of care
HSCIC keeps a master file so that future
being provided. The method of collecting
information can be added to the right
the information ensures that patients’
patient’s registry record and hospitals can
confidentiality is protected and you can
be told if any of their patients are suitable
read more about this in the next section. If
for a clinical research study.
personal information into a different
you do not wish to have your information
submitted to the IBD Registry the section at
the end tells you how to arrange this.
What is the Health and Social Care
Information Centre (HSCIC)?
HSCIC is an organisation which is approved
Information about your IBD and its
for their standards of data security and
treatment will contribute to improving
confidentiality, and which is authorised
patient care in three ways.
to collect and process information about
1
The IBD Registry will analyse the
patients and the healthcare they receive.
information about IBD and the
The information the HSCIC holds, including
healthcare that people with IBD receive
information available to them from other
across the UK and publish the results.
central UK NHS bodies, may be used for
2
External researchers may approach
analysis of the healthcare you receive, to
the Registry for approval to use the
help contact patients (e.g. about a research
information in their studies, for example
project for which they might be suitable) or
to compare different treatments and
to provide information to the IBD Registry
outcomes.
about patients’ health status.
3
Researchers may ask the Registry to
studies. If a research project comes up that
What identifiable personal
information will be used?
you might be suitable for, your doctor will
Your NHS number, postcode, date of
help find suitable patients for clinical
Which
organisations are
involved in the
IBD Registry?
The IBD Registry
is run by the
British Society of
Gastroenterology,
supported by:
● Crohn’s and Colitis UK
● CICRA – Crohn’s in
Childhood
● Association of
Coloproctology of Great
Britain and Northern
Ireland
● British Dietetic
Association
● British Society of
Gastroenterology
● British Society
for Paediatric
Gastroenterology,
Hepatology and
Nutrition
● Primary Care Society
for Gastroenterology
● Royal College
of Nursing –
Gastrointestinal Nursing
Forum
● Royal College of
Physicians - IBD
Programme
CONTACT
INFORMATION
NHS numbers means we can track the
If I do not want my information to
be sent to the IBD Registry now,
what should I do?
care a patient receives even if they attend
Talk to your IBD doctor or nurse about your
IBD Registry
different hospitals. The postcode means
concerns. The IBD Registry will be most
British Society of
we can understand the care people receive
effective if it has information from as many
Gastroenterology,
in different parts of the country. This
patients as possible, but if you do not want
3 St Andrews Place,
identifiable personal information will be
your information to be used, please tell
Regent’s Park,
pseudonymised by the HSCIC before being
your doctor, nurse, or a member of the IBD
London NW1 4LB
passed to the IBD Registry.
clinic administration team. They will make
Tel: 020 7935 3150
sure your information is not sent to the IBD
Email: info@
Registry. This will not affect your treatment
ibdregistry.org.uk
birth and gender are included in the
information sent to the HSCIC. Having
What happens to the information
about me?
in any way.
The IBD Registry will analyse the information
are in each area and how the illness affects
Who is responsible for the
information about patients in the
IBD Registry?
them, as well as describing the healthcare
The British Society of Gastroenterology
services and treatments they receive. Some
is the Data Controller for the Registry
pseudonymised information may be shared
information and is responsible for ensuring
with other UK NHS audits that report on
that the IBD Registry complies with the
healthcare services, including the IBD Audit
Data Protection Act 1998.
and publish reports about IBD in the UK.
These will tell us how many patients there
run by the Royal College of Physicians.
care IBD patients receive and help our
How can I make a complaint if I
wish to?
understanding of the illness. Information
If you are unhappy about any aspect of the
on this and any published reports will be
Registry or how your information is being
available at www.ibdregistry.org.uk.
used, we hope that in the first instance you
This will help to improve the quality of the
will talk to your IBD doctor or nurse to try
How long will you keep my data
and can I opt out later?
and resolve the problem. If you wish to
Crohn’s Disease and Ulcerative Colitis
of the IBD Registry, then you can do so by
are lifelong illnesses and therefore the
writing direct to the Registry Administrator
Registry aims to keep information on as
at the address given below.
make a formal complaint about any aspect
many patients as possible indefinitely. By
doing so we can understand the long-term
What will happen next?
pattern of disease and how well different
Over the next year we will be asking all
treatments work over time. If at any time
patients to sign a consent form, which
in the future you wish to stop information
confirms whether we can continue
about your IBD and your healthcare being
submitting your information to the IBD
held in the Registry you can do so either
Registry and whether you wish your
by speaking to your IBD doctor or nurse, or
pseudonymised information to be available
you can contact the Registry Administrator
for approved IBD research.
directly at the address given below.
Website: www.
ibdregistry.org.uk
The British Society
of Gastroenterology
is a charity
registered in
England: Charity
number 1149074