CAMBRIDGESHIRE PROJECT FOR LATER LIFE II
Administrative Centre
Department of Public Health and Primary Care
Institute of Public Health
University of Cambridge
Forvie Site
Robinson Way
Cambridge CB2 2SR
Telephone: 01223 330312
Fax: 01223 330330
(Letterhead amended for each centre)
INFORMATION FOR RELATIVES AND CARERS
Ageing is now recognized as one of the major challenges facing the world’s populations. It
presents challenges to national and local policy makers and service providers in planning and
providing for the needs of the older population.
This study is based on the original MRC Cognitive Function and Ageing Study (CFAS) which
looked at ageing and health in six centres in the UK; Newcastle, Nottingham, Liverpool,
Gwynedd, Cambridgeshire and Oxford. The study began in 1991 with 18,000 participants, and it
still continues today.
Since the start of the original CFAS study there has been an increase in life expectancy and
improved screening, diagnosis and treatment of many chronic disorders. The aim of this study is
to find out how health and well-being change as people grow older. Some people experience
difficulties as they get older while others remain fit and active. We are interested in the full range
of experiences so that we can get a true picture of ageing in populations.
We now wish to see whether health patterns change between different generations and we can
only do this by inviting a new generation of people of 65 years and above to take part. In this
new study we plan to approach 12,500 people at four of the original six CFAS centres,
Newcastle, Nottingham, Gwynedd and Cambridgeshire (based on Ely and surrounding villages);
and also a new centre at Neath, West Glamorgan.
Why has my relative/friend been approached?
Your relative/friend has been randomly selected from National Health Service records. The only
information provided to MRC CFAS was their name, address, sex, and date of birth, all of this
information has been processed by us in accordance with the Data Protection Act 1998. We do
not know anything else about them.
Do they have to take part?
No, there is no obligation to take part and they can withdraw at any stage, without giving any
reason. The study is for medical research only and will not affect their medical care or legal
rights.
What will happen if my relative/friend should take part?
A research interviewer will arrange a suitable time and date to visit your relative/friend. They
will go through the information sheet with them and answer any questions they may have before
asking for their consent to take part. If your friend/relative is unable to give informed consent
A collaborating centre in the Medical Research Council Cognitive Function and Ageing Study II
(MRC CFAS II)
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03/12/2009
you will be asked if in your opinion they would have wished to take part in the research if they
had been able to express a view. If you agree to this you will be asked to sign a consultee consent
form on their behalf.
Following this your relative/friend will be asked questions on their background, health, contact
with friends and family and day to day activities, there will also be a section on memory and
concentration. A full interview will take approximately 1½-2 hours. If your relative is unable to
conduct a full interview, an interview based on the most important questions would be conducted
which would take no more than 15 minutes.
The interviewer would then seek your consent to conduct an informant interview in which you
will be asked to give information on your relative/friend’s health and well-being, which would
take approximately 1½ hours; this can be arranged at a time convenient to you.
If your relative is able we would ask consent to collect a saliva sample which would be stored for
research purposes investigating ageing which would include genetic (DNA) tests.
Some participants may be asked in the future for a blood sample which would also be stored for
research purposes which would include genetic (DNA) tests. The results of these investigations
are analysed in an anonymised manner.
Some people in the original CFAS study have made a further contribution to the study by
agreeing to examination of the brain after death. This gift, so generously given, has helped us to
improve understanding of brain changes in ageing, some of which cause dementia, such as
Alzheimer’s disease. We may in the future be able to continue this work, by asking participants
in this new study whether they might consider a Declaration of Intent to donate (DOI). If people
express an interest in this aspect of the study, further information will be given by our research
team.
Confidentiality
All the information collected by the study is completely confidential and it is stored without
personal details on secure systems in compliance with the DPA 1998. Data collected by the study
will only be analysed by approved researchers.
This study has been considered by the Cambridge 4 Research Ethics Committee and Cambridge 1
and 2 Research Ethics Committees.
If you would like any further information or have any questions please contact one of the
investigators below or look at our website: www.cfas.ac.uk
Professor Carol Brayne
Local Principal Investigator
Mrs Linda Barnes
Study Coordinator MRC CFAS II
A collaborating centre in the Medical Research Council Cognitive Function and Ageing Study II
(MRC CFAS II)
Version 1.2
03/12/2009
A collaborating centre in the Medical Research Council Cognitive Function and Ageing Study II
(MRC CFAS II)
Version 1.2
03/12/2009