This page contains copies of information letters used by the Cambridge centre. Some centres had a slightly different initial approach but used similar documents on their own letterhead and modified where appropriate, to comply with Local Ethical Committee requirements.
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Wave 1 study information sheet
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Wave 1 study information letter from GP
CAMBRIDGESHIRE PROJECT FOR LATER LIFE
Department of Community Medicine
Institute of Public Health
University of Cambridge
Forvie Site
Robinson Way
Cambridge CB2 2SR
Telephone: 01223 330311
Fax: 01223 330330
Dear
I have been asked by the Department of Community Medicine at Cambridge University to help in a study into the health and well being of people as they grow older. Some people experience difficulties as they get older while others remain fit and active. We are interested in both kinds of ageing so that we can get a true picture of the ageing process. This study is part of a national study which aims to improve our understanding of changes which occur with ageing and to help policy makers meet the needs of the modern generation of older people.
The interviewers for this study will be calling in the next week or so to ask if you would be able to help. They cannot visit everyone living in this area and so are seeing as many people as possible, selected randomly from our list. The research will be most valuable if as many as possible of those of you who are approached take part.
When the study interviewer calls she will produce identification and explain the study in more detail. If she calls at an inconvenient time she will be happy to call again later. Your cooperation is, of course, voluntary. We would be very pleased if you felt able to help the research team in this study.
Thank you.
Yours sincerely
Wave 3 study information sheet
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Wave 4 Summary information sheet
CAMBRIDGESHIRE PROJECT FOR LATER LIFE
Dept of Public Health & Primary Care
Institute of Public Health
University of Cambridge
Forvie Site
Robinson Way
Cambridge CB2 2SR
Telephone: 01223 330311
Fax: 01223 330330
SUMMARY of INFORMATION about the STUDY
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The Cambridgeshire Project For Later Life is a collaborating centre in a large multicentre study of health and ageing that started in 1991 – the Medical Research Council Cognitive Function and Ageing Study (MRC/DoH CFAS). |
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You may have been interviewed once or twice since 1991, or more regularly and more recently. |
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You may have given us a blood sample or even made a further contribution to the understanding of ageing by agreeing to possible future examination of tissues, particularly the brain, at autopsy. These samples and tissue are treated as gifts to the research. |
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All the information collected by the study is completely confidential and is stored anonymously, without personal details. The blood samples and brain tissue are stored securely and anonymised. |
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There will be no feedback to you as donors, or to your families, of results of any analyses of the blood samples. This includes work on genetic factors and their contribution to degenerative disorders of the brain. These results are stored anonymously in the database. If you have any concerns about this issue, do contact (named clinical investigator). |
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We now have funding to reinterview everyone ten years after the first interview. The interview will take between 45-60 minutes and will ask questions about health and well-being since we last saw you, and also contact with social services. |
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The study continues to be for medical research only and will not affect your medical care. |
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There is no obligation to take part, and you can withdraw at any stage. To take part in even a small way is helpful, and we thank you for your help in the past and for your continued interest. |
A fuller Information Sheet is attached or is available from the above address. If you or your family have any queries, please contact us on this telephone number: (local and central telephone numbers)
Local Named Clinical Investigator
Wave 4 Study information sheet
CAMBRIDGESHIRE PROJECT FOR LATER LIFE
Department of Public Health & Primary Care
Institute of Public Health
University of Cambridge
Forvie Site
Robinson Way
Cambridge CB2 2SR
Telephone 01223 330311
Fax: 01223 330330
INFORMATION ABOUT THE STUDY
During 1991-2 you very kindly agreed to take part in a large multicentre study of health and ageing. The study is longitudinal and you may have been interviewed once or twice since 1991, or you may have been interviewed more regularly and more recently. Some participants have given us a blood sample and a small number have made a further contribution to the understanding of ageing by agreeing to possible future examination of tissues, particularly the brain, at autopsy. Each contribution has added to the overall value of the study.
This unique and valuable source of information about older people, together with the blood samples and brain tissue so generously gifted to research, is now being used by researchers at the 6 centres where the information was collected. All the information collected by the study is completely confidential and is stored anonymously, without personal details. The blood samples and brain tissue are stored securely and anonymised, and are available for the investigation of major causes of illness and frailty in older people, most particularly those conditions which affect the brain tissues. Requests to use this valuable resource are considered carefully by our Management Committee, and the Multicentre and Local Research Ethics Committees have to approve all our procedures, including the use of the blood samples and brain tissue. This includes work on genetic factors and their contribution to degenerative disorders of the brain. The analyses are for research only and results are not fed back to you, your family, or your GP. If you have any concerns about this issue, do contact (named clinical investigator).
The aim of the study continues to be to examine how health and well-being changes with age and about what might influence the different ways in which we age. From this study we hope that we will be able to suggest ways in which the health of older people can be improved in the future. We have published papers in scientific journals e.g. Lancet, British Medical Journal, describing the older population and changes which occur with ageing, and presented findings at national and international conferences such as that held by the International Association of Gerontology and the Alzheimer Society. We have also provided information for the Department of Health Audit Commission and the Committee on Continuing Care. We hope to send out an update to the newsletter we sent out in 1996 to expand upon this.
We have now been given further funding by the Medical Research Council to reinterview everyone in this large and important group of people at ten years from the first interview. Again we will be asking questions about your health and well-being since we last saw you, and also contact with social services. The interview should take between 45-60 minutes. Also we will be able to carry out further analysis of the blood samples and brain tissue so generously gifted.
As always, we would hope that the study will continue beyond 2003, and we will continue to be in touch, and to honour any declarations of intent to donate tissue.
The study continues to be for medical research only and will not affect your medical care. There is no obligation to take part, and you can withdraw at any stage. To take part in even a small way is helpful and we thank you for your help in the past and for your continued interest.
A shorter summary of this information is attached. If you or your family have any queries, please contact us on this telephone number:
(local and central telephone numbers)
Local Named Clinical Investigator
Wave 4 Introductory letter
CAMBRIDGESHIRE PROJECT FOR LATER LIFE
Department of Public Health & Primary Care
Institute of Public Health
University of Cambridge
Forvie Site
Robinson Way
Cambridge CB2 2SR
Telephone 01223 330311
Fax: 01223 330330
Introductory letter
Dear
Several years ago you were kind enough to help us in a large and important study funded by the Medical Research Council. Over 18,000 people helped us, between 1991-2 by agreeing to take part. Some people were seen just once or twice and others more frequently. We are pleased to re-contact you to let you know that we are about to re-interview everyone who was initially interviewed in 1991 and 1992.
The aim of the study continues to be to examine how health and well-being varies and changes with age. The longer the study continues the more valuable each contribution becomes. From this study we hope that we will be able to suggest ways in which the health of the older people can be improved in the future. Your contribution, if you are willing to be re-interviewed, will help us with this.
Over the past ten years the study has investigated many aspects of life, changes and lack of change in health and well-being, frailty, contact with health and social services, and immune and hormonal aspects of ageing.
The study continues to be for medical research only and will not affect your medical attention. There is no obligation to take part and you can withdraw at any stage. All information collected is completely confidential. Each individual contribution increases the value of the findings from the study.
If you or your family have any queries, please contact me on this telephone number: 01223 330311
An interviewer will contact you in about 7 days to make an appointment to visit.
We hope very much that you will allow us to interview you again.
Thank you again.
Yours sincerely
Prof Carol Brayne
Cognitive Function and Ageing Study (CFAS)
GIVE THE GREATEST GIFT
Brain tissue For Understanding the
Ageing Process
You are probably familiar with organ donations of the heart, kidneys or eyes, to sustain the health or even the life of people in need.
Similarly, the donation of brain tissue to research is a precious and unique gift; it will enable scientists to understand the ageing process and the link with diseases such as Alzheimer’s.
We need to know more about the effects of the normal ageing process on the brain, and in which ways they differ from the changes which occur in dementia. The diagnosis of Alzheimer’s disease cannot be definitely given during life, as there are as yet no reliable tests. It can only be confirmed after death by examination of the brain.
In order to understand more about what is going wrong in the diseased brain, we first need to know more about what changes occur in the normal ageing brain. The difficulty is that these things can only be discovered by looking at brain tissue after death. So far, very little has ever been done to find out what are the normal changes in the brain as people grow old.
So what can be done now?
CFAS is a large study that has been going on since 1989 which involves people over 65 in 6 centres in Britain. There are about 2500 in the Ely area, selected at random, who are already involved in this important study. It is hoped that the information collected through the interviews conducted in this study will increase our knowledge of dementia.
A very important development in this research project is that some participants are being asked to consider donating brain tissue after death. It is particularly important to find older people who are not suffering from dementia to help us in this way as we have never before compared the changes which occur in the brains of normal elderly people with those who have dementia.
Those who feel able and willing to donate their brain after death are making an enormously valuable gift that will bring hope of a better life for future generations. It is not an easy decision to make and needs to be discussed with family.
Those who are willing and able to make this decision can sign a Declaration of Intent. This is not a legally binding document, so potential donors are free to change their minds at any time. In fact, the final decision to donate the brain has to be made by the relatives after death. This is one of the reasons why it is so important to involve families in making the decision to donate, so that everyone is aware of the donor’s wishes.
Will the tissue donation cost the family anything?
No. All the costs will be met by the study.
Will the family find out what the brain examination showed?
Yes, if they wish to. The next of kin will receive a letter from the pathologist thanking them for their help, and asking them to indicate whether they wish to receive a report of the findings.
What effect will brain donation make on funeral arrangements?
There should be no disruption of funeral arrangements. The donation is carried out soon after death, normally within 24 hours. This does not delay funeral arrangements. The removal of the brain, under the supervision of a pathologist, does not leave any apparent marks.
Will confidentiality be kept?
The details of those who sign a Declaration of Intent to donate brain tissue will be entered on to a database. Confidentiality and anonymity will be maintained by coding the entries. Information will only be passed on to other health professionals, such as the GP, with the donor’s consent.
Data collected by the study will only be analysed by approved members of the research group.
What other help can you give?
Your gift of brain and related fluids will be placed in the custody of the Cambridge Brain Bank Laboratory, which acts on behalf of the University of Cambridge.
Your brain donation is intended primarily to support the research project entitled Cognitive Function and Ageing Study. You may use the ‘Declaration of Intent’ form to permit the CBBL to use your gift of brain and related fluids in other research projects.
Research may involve genetic study and may lead to the discovery of genes that predispose to disease. It is our policy that donor identity is protected in this kind of research by withholding any information that may identify the donor from the research workers. Genetic information is not communicated to anyone outside the research project, not even to relatives. You may use the ‘Declaration of Intent’ form to permit the CBBL to use of your gift of brain and related fluids for genetic research in this way.
Development of new drug therapies and diagnostic tests to the point where they can be made sufficiently widely available to benefit human health can sometimes only be achieved with the involvement of the commercial sector. You may use the ‘Declaration of Intent’ form to permit the CBBL to use of your gift of tissue to help the commercial sector achieve these aims.
Please keep this leaflet and show it to your family, friends and anyone involved in your health and care. If you require any further information about brain tissue donation, please contact:
Sister Angela O’Sullivan RGN DN
Research Nursing Sister/Clinical Nurse Specialist, Mondays or Thursdays on 01223 217336
- Research Information
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Background
- Brief Introduction
- Research Themes
- Bolt-on Studies
- Glossary of Terms
CFAS I
- Design and Interview
- Study Protocol
- Scientific Strategy
CFAS II
- Study Protocol
CFAS Wales
- Introduction
Documentation
- Study Information
- Consent Forms
- Neuropathology Forms
- Questionnaires
Data
- Data & Analysis
- Liverpool Data
Oversight
- Advisory Committee
- Biological Resources
- Fundings
- Ethics & Legal Aspects
- Archive Documents
- Management Structure
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